This is such an important topic for people with disabilities and chronic illness. If you see me out in the wild, I am having a good day. For every day I can get out and interact with people, there are at least five spent mostly in bed, never venturing out of the back half of my house.
@@ratboy22222 I'm not sure when. Might have been in a book, and I think he made a video on it. Complexly is the name of their company too, so it's been around a while.
@@ratboy22222 I just did a search at Nerdfighteria Dot Info for "complexly" on the vlogbrothers channel and the earliest hit I turned up was in October of 2008, but it's clear from context that the concept had already been around a while ("Hank, I gave my entire speech about the importance of imagining other people complexly...with, like, a massively unzipped zipper").
@@wonderingalbatross2400 I know you mean well but as someone who is chronically ill and disabled I don't get well. It's better to say something different like "I hope you feel better soon", it's a small change that makes a big difference :)
Mental issues are also important to keep in mind. I am autistic. So my ability to do things isn't just a matter of my physical disabilities and chronic illness. My autism is also a factor. So I try not to judge myself based on other people. Not to mention that other people may have supports that I don't. I don't have a caregiver. I have to do everything for myself. So I am really proud of the fact that I can buy and prepare food, go to medical appointments etc. Sometimes just doing the basics is commendable.
You are doing brilliantly. Attending medical appointments needs to be awarded with some kind of medal, they make it so flipping hard! I discovered by accident that I have an appointment in a couple of weeks which is really important. Fortunately I can get the time off work and get myself there. But it was only luck. They’ve switched to online notifications only. But sent the appointment message before the one saying they switched. So I was waiting for a letter. Not a random message buried in an app I never use. So you managing your appointments on your own….epic. Well done you. This is hard. Harder than it needs to be. And you are doing well.
Heck yes it is! Its so important to celebrate the mental endurance it takes to be chronically ill and maintain boundaries. ✨❤️ Having decision fatigue and explaining constantly why you must decline, that’s why my best long term friendships are people who pick right up where we left off no matter how long it’s been. And people who have common special interests so we share photos and creative ideas.
JennOscuru, all my family are Autistic too. I think you are brilliant. My husband, both sons and I have a strict routine. If anything changes, it is a huge freak out xx
@@dees3179 I am unemployed. So that gives me flexibility. But I still struggle. I have to call to make some appointments and haven't done it yet. It's so much easier when they call me.
The is a really specific moment in this, around 15:35 where Jessica pulls a pain- face, and it looks exactly like my mum when she's got a migraine (which is frequently 😓) and it just broke me a little bit because I totally understand how this expression is a tiny fraction of the pain going on inside, and I just want to send you huge gentle hugs Jessica, and all you other chronic illness havers 🤗🤗🤗
Thank you so much for this! I've had a chronic illness since I was 8 years old, and I had parents who wanted as normal a life as possible for me and sort of encouraged me to put on a good face, so I learned at in early age to do that, thus fooling a whole lot of people into thinking I wasn't in a lot of pain all the time. Fast forward a decade or two to my adulthood, and I get doctors to whom I tell I have debilitating chronic fatigue and they act sort of like they take me seriously, but then my husband tells me later that no one would know because I act like I'm feeling so well. And I do it unconsciously. So at times when I'm having a fatigue crash, especially when I need my husband to drive me to an appointment, I ask him to come in to the appointment with me so that he can tell the doctor that what they see is not what's really going on with me. I think that has helped sometimes.
I relate so well. I have not been sick than only few years, but I still want to hide any hurt like a sick animal...I am afraid to show vulnerability and that I won't manage alone. So I am all chirpy chirpy and use the last bit of energy to convince that I have nothing wrong with me. It is frustrating, but more like an instinct than anything else.
Same. It's taken me so long to realize that I'm hiding it. I'm hiding/masking it from myself. And then I think I'm being open and telling people what's going on, and they can hear me say it but not *see* it because I don't act like it. And then trying to "act like it" feels like I'm pretending to be sick when I really am. I just don't know how to show it.
Thank you so much for this video! It’s cheesy as hell, but I had a therapist say something along those lines- ‘don’t compare other people’s highlights to your own blooper reel’. That phrase keeps me sane when I’m on social media now.
yeah, nice one. I've heard it like this: don't compare other people's outsides to your insides... What we show others and how we truly feel are two different things!
I’m dealing with depression. Some days all I do is sleep, let my dog out in the yard and take meds. Then there are several days in a row I act like a normal person doing errands and stuff around the house. I understand how you feel. I have had bronchitis several times and it can really hurts. I hope you feel better. I’m glad you have Claudia to be there for you.
I've been thinking about this for a while. I often feel like I'm pretending to be or not to be chronically ill, because I'm either disguising my bad days or, if I talk about my bad days during a good day, it sounds like it exaggerating them and putting them out of proportion. I've been wanting very much for people to not see me as split down the middle like that, trying to learn how to reach out and share all kinds of days, to be able to revel in feeling good and share what the bad times really look like, and still feel like someone with agency during them.
I am going through chemotherapy for breast cancer. And I really hoped to work more than I have been able too this week. Your video reminded me sometimes that is just how it works out.
@@dees3179 after the first 6 treatments my tumor shrunk by half. My cancer team has connections to a top research facility in the country. I expect to be cured in 10 months.
In Denmark a group of chronically ill people have started a thing called “chronic influencers” and we share the good and the bad on insta and Facebook ❤ I started shading myself some years ago but Instagram bullied me too much technologically with not letting me have an account for my art and one for my illness stuff seperately but switch between them. But if one doesnt have that problem I recommend ❤
This was a very validating video - I’m autistic, and even before I knew that I knew I just could not do things other people could and felt so weak because of it. Now I know I’m super strong because I do so many things despite my disability! I may order my groceries delivered 90% or the time, and stay in my pajamas and work from bed most of the time, but I also lead meetings and go to the gym several times a week, and that’s strong too ☺️💕
Your accomplishments, despite your disability is a definite Plus ++. You sound like the person during covid that worked from home, so you have persevered against odds very well ! 🌟🌟🤗🤗👏🏻👏🏻
@@brennaweaver3974 O god this is SO true! I never thought about it like this but since childhood/the 90s people tell me that not only do I need to „use my full potential“ but also that I just don‘t live up to other‘s potential and that because of this I am failing at life! the perks of being recognized as „gifted“ at four with people just willfully ignoring all signs of Asperger/ASD until 32 😵💫 I have only allowed myself to give myself some grace since around last christmas and let‘s just say it is a process with some of my social circle fighting me every step of the way and others wildly supportive 🤷🏼♀️
I wish I had your videos back in high school. They would have not only helped me get through my toughest moments, but I think they could have helped my parents and more specifically my dad, understand me. He would say, "if you can lay in bed and watch RUclips all day, why can't you go to school?" and I tried to articulate why I can do one thing but not another, but I just didn't know how to.
Ughhh that is so frustrating!! I’m so sorry he didn’t understand. Just the difference between laying and sitting can be so extreme. There are days I can stand for hours while baking and there are days I can’t even sit. Today I had to lye flat all day. I just didn’t have the strength to sit up.
This reminded me of how I always felt that if I was home sick from school or work that I shouldn’t do ANYTHING remotely fun, because I felt like I had to justify staying home to myself or my parents. I think your comment is a good reminder that even if you are feeling poorly, it doesn’t mean you have to suffer.
I became bedridden and solo back before the internet existed. I didn’t have staged lives on instagram to depress me. But neither did I have videos like yours to make me feel less alone in what I was going through. Bedridden and solo watching this now. (ME/CFS is such fun!) Thanks for sharing ❤ Wishing you good rest and clear lungs!
I became I’ll in my childhood before social media, but I always wonder what it would be like to be chronically ill without social media as an adult. I think I’d probably feel more alone, because now I at least know other chronically ill people are out there.
@@findingbeautyinthepain8965 ugh well I can’t imagine your scenario either. Mine was extremely isolating. It does help to have contact now with people going thru something similar.
Thank you Jessica, it is so frustrating when people say "but you don't look sick" for a 64 year old chronic pain sufferer who has had chronic pain since my early 20's it really does get boring & annoying. I wish you a very speedy recovery. 💛💛🧡🧡♥♥💜💜💙💙💚💚🖤🖤
I didn't know how much I needed this. I don't usually write comments but I just wanted to say thank you for sharing this, I've been feeling pretty down on myself for being sick lately and I feel a lot less alone when I see stuff like this ❤️
I also have a handful of chronic illnesses and am sick. This video made me feel like I wasn't hidden away in my room alone but hanging out with my sick friend. Thank you for that!
I'm on 8 hrs sleep in 3 days, diabolically messy home, chronic illness playing up, and about to start another round of IVF meds. I needed this to make me feel validated enough to just eat some crappy noodles and play a video game rather than try and somehow make this a 'good' (basically a 'productive') day. Get well soon and keep making your wonderful unfiltered content 💛
First of all, I'm so sorry you have such a terrible lung infection. I hope you get better soon ❤ Secondly, this video was so needed. For so many reasons. People that don't have chronic illness/disability need to see this video so they can understand that when they see someone out and about having a good day, they are seeing them at their absolute best, and unfortunately that is not their day-to-day reality. Those of us with disabilities or chronic illnesses needed this to remind ourselves of the same thing, and not to compare ourselves to others on their good days.
I'm feeling this so much right now. I have a five-day Holter heart monitor strapped to my chest, and of course, the days I've had it on are some of the best I've had in over a year. I'm afraid that when my cardiologist sees these results, he may think that I don't need the treatment I'm scheduled for, when I absolutely do - he's just seeing an unnaturally, unexpectedly good moment in my health, which is very uncommon for me! Seeing only the "good" moments could literally deny me care right now, and it's throwing into sharp relief that it's so vital in so many ways that chronically ill folk are believed when we articulate when we're doing poorly! I hope you get back to baseline soon, and are able to kick this infection with as few lasting effects as possible! 🌈
I just want to appreciate how much effort you're putting in when you're feeling so terrible. Even if it's just you doing what you can, it's still a lot of effort and a lot to share. Feel better!
indeed, i do feel better watching you share about your bad days. not in a "harrharharr (Mr. Burns laugh) I´m better than her!"-way, but in a "I´m not alone with my bad days" way. i hope you feel better soon!
Thank you for the mr burns laugh aaaahahahaha I have been watching the simpsons while I lay in bed a good bit of the past weeks and I genuinely think its making me get better
Thank you for something I sometimes forget. I have metastatic breast cancer. It’s not that I feel unhealthy, it’s that I am always -always- so very tired. I have days where I’m able to do things and days I’m lucky I can get out of bed & get dressed. My problem is on good days I over do it. I still can’t figure out how to pace myself. And when people see me having a good day they say, “you’re handling it so well.” No. No, not really. Just not good at not being upbeat when others are around. Hope you feel better soon. ❤
Such a good point that’s so hard for everyone to remember - us as chronically ill or disabled people ourselves AND those not experiencing it. Even the editing you choose to make a point out of your coughing but that’s only the most obvious symptom. Depending on the day I find it either inspiring or demoralising to see. Nothing is different on either day except our perspective.
I know these thoughts very well, thank you so much for commenting about it! Sometimes I don’t even believe myself regarding really bad moments, just the moment I feel slightly better …
@@paulasturm9893 Right??? I have a few good days in a row & my brain starts thinking maybe it's over, maybe I can finally get back to myself... but it comes crashing down eventually & I have to remind myself that this IS me now
Thank you for sharing this. Having autism, anxiety, and depression means my hard days don’t have a visible reason. It bugs me when people judge what I can do and disbelieve me when I say I struggle. Hope you feel better soon 💕
i was just talking about this! visited family and they all think i’m well again because they saw me at a few dinners. very difficult experience. thank you so much for bringing positivity and encouragement to my life
Claudia is a lovely person! It's a great feeling to help someone you love, and Claudia seems to be pretty great at it. (Though naturally I am judging her by her good days, the ones I am privvy to - but it's a good example to attempt to emulate)
Really appreciated what Claudia said at the end! I've been learning aerial hoop for about a year and it's been incredibly hard with my disabilities. I started with basically no muscles at all and I find it so much harder than everyone else. It's really difficult to focus on my own progress and not just feel rubbish because everyone else can do so much better than me. I feel the same as an author, I often look at people who win awards and have huge success and feel like I'm not good enough. I like the idea of instead thinking about how I can be a positive presence and if helped anyone or made them smile etc, to take my mind off comparisons. Thank you!
Just found out what aerial hoop is because of your comment, and it looks really cool! So many people just don't do the things they want to do because they're afraid of failing (I've fallen into that trap myself), so seeing someone try so hard at something for a year and counting is really amazing. It makes me want to keep trying to get better at my own hobbies. Thank you for sharing, I wish you nothing but the best in your endeavors
I'm a pole dancer and disabled as well. It can be super challenging sometimes because there are moves that are just not possible for me to do with how my body works, but at the same time, it's a great opportunity for creativity because it gives me a chance to discover new entries and ways to get those tricks while working with my physical limitations. It's made me a better instructor because it forces me to be adaptive and innovative. Good luck with your aerial journey!!
I've been learning pole for about a year and in a similar situation. I find it challenging to keep a positive mindset while progressing slowly (and sometimes regressing) while everyone else seems to be so far ahead. I'm sorry you're also having that challenge, but I find it comforting that I'm not the only one who is persistent with learning a fun and active skill, even if it takes 10x as long as some others. Aerial hoop sounds cool!
@@BelleChanson0717 The fact that you wanted to do this and ARE, is such a positive thing ! You took on a challenge and are doing it !! Just to start is Badass!
I really needed this today. We're sick today and have been struggling for a while, and keep thinking recently about how it hurts that the people around us mostly don't know, that when we go out it's only when we're able to and that's how they see us.
I had an injury at work and was given a less physical task. Some people judged me, and one even yelled at me because I kept reminding people who didn't know that I was injured. I DID so because I was self-conscious and worried people would be judgmental, and some were. I was always a good worker, so his anger was hurtful. His anger was so far away from what I would be like in his situation. Just have to let it go.
@@KindCountsDeb3773 Exactly. We can’t let others false views of us became how we see ourselves, whether it’s negative or positive. There are actually a lot of people who see themselves very positively because the people around them idolize them. In reality, these people are terrible humans, but they can’t see it. So internalizing bad or good perceptions of ourselves to much can be dangerous for our mental health.
@@findingbeautyinthepain8965 Yes, it doesn't help that I have a "pleaser" mind set. I'm retired a long while and it still bothers me, when work is brought up or some other trigger. But that is rare, so I'm grateful.
The mentality of I suffered so you should too is something I don’t understand. If I suffered, I don’t want someone else to suffer in the same way. I try to help others when I can. Literally just kind words can help.
I know there’s more than one person that was helped with this video, but this really helped me. I’ve barely been able to leave the house or see people since 2019. Today really hit me with feeling like my life is meaningless. This helped me so much. I need to work on being ok with just being. It’s hard. Thank you for this. 💜
I know this feeling. I'm in the ATL too, btw, if that is what your name stands for (Atlanta)? I lost my mom in 2020 and haven't felt ready to face the world since then. Very painful.
@@mygirldarby I'm sorry for your loss. I had so many agoraphobia issues after I lost my dad, but time helps. I hope that you can find some peace in yourself and know that the world can be kind, and even if it's also scary it does have gentle and beautiful things to do and see too.
Thanks! i think this is an important lesson, and I have think about similar things Claudia talked about. I wish you well!! ❤❤❤ I actually had a terrible day (xingjing ping just get his president for life in China, I can't help but to feel afraid and bleak about my future and our future); Nonetheless, calming and heartwarming to see your guys together. Everyone seems to have their own struggle, hopefully, we could be more sympathetic and learn strength from one another. --peace, see you shine again.
You made somebody feel better for sure! Me! I'm dealing with post-covid on top of my usual stuff (RA, CFS/ME and post brain injury seizures and other lovely things) and even though I have deleted social media specifically because I wanted to feel less rubbish, I still see people around me and how they function in ways I'm not able to and it makes me feel very useless, powerless, demotivated at times. In the "I am trying so hard and yet I'm failing" kind of way, maybe more in competition with fictitious healthy self more than with other people. ANYWAY, my point is that your bad days videos help me immensely. They help me accept over and over that I am sick and I am not choosing to be unproductive. Thank you, Jessica. Thank you for all the gentle reminders that it's okay to be disabled and take time to care about your needs. Hope you feel better soon, sending all the spoons I have left And to all of the others having a day as well.
I watched this while folding laundry (very slowly) in bed :) I really appreciate what you said in this video, I find myself frustrated sometimes when people around me don't seem to understand how terrible I feel sometimes, but I'm realizing I'm probably not communicating that to them very well when I just shut myself in my room at the worst times. I hope your infection and cough clears up soon!
I’ve always said everyone is absolutely different from everyone else. So of course no one else is the same. You don’t share the same body for one thing. From there the list just goes on.
I’ve been going through CBT lately and this part about “changing the thought” and “don’t compare yourself to other people” and I’m so glad these things are connecting. I struggled with like serious social media sadness lately too. Thanks so much!
It's good to hear YOU say CBT is helping you. I have had little results with it. Here's why : 👉🏻👉🏻 I didn't do my part with the therapy. I did not use it as a good tool. I am going to look for further therapies with my Dr. Your positive outcome helped me !
When I'm feeling depressed, my body put it's foot down and made me quit my job for three months, I enjoy watching videos which I would categorized as quite, gentle homelife. They normally have warm lighting and lofi music, which for me when I'm depressed high energy videos make me feels anxious and more exhausted. Which does lead me to comparing myself to those people subcousiously. I have cut out alot of my social media in the past couple years since I honestly felt more depressed and anxious after being on IG and Twitter. I obviously still use YT, but I have become more particular on what I am watching.
I can relate a lot to this today. I’m also stuck in bed with what feels like the worst chest infection I’ve ever experienced and I needed this video so much. It made me feel much better about myself and reminded me to be kinder to myself when I need it most! I hope you feel better soon, sending love 💜
These videos where you openly show your bad days as well are immensely helpful to me whenever I have a bad day, be it due to mental or physical issues. They have literally gotten me through the worst day of my life, and eased the panic disorder that came after it. You always provide such a beautiful combination of personal experience, kindness and emotional support, and helpful thoughts and tools! I would like to try and help as well by describing my own good and bad days for anyone who is interested :) My set of regular issues is rather different from Jessica's: It's usually almost exclusively in my brain (various forms of neurodivergence) while my body is technically fine, but my range from good to bad days is also quite extreme. In the hopes that it may be helpful, I'll elaborate in some detail. When I have a good day and have taken my meds, I am able to do SO MUCH stuff from, bascially, 8am to 11pm with only short breaks for using the bathroom or eating. What I consider a relaxing walk in this state is more like a small hike of around 3 hours, and I still dance around at home after it. I am able to focus on and create beautiful fictional writing for hours, or have a deep philosophical and moral discussion with complete strangers. I answer all my e-mails and messages quite quickly. I am able to go out to different places to run errands. Uni activities are not only easy, they give me energy. My brain is ridiculously good at and enjoying tackling almost any academic problem, and it's using its full potential. I analyse and question everything with great skill and joy. I have so much love for everything and everyone, and the energy to show it. In the span of one day, I can practise and/or use four different languages, listen to movie analysis podcasts and a Stanford lecture on biology, repair a t-shirt, watch Star Trek (and need a moment to happy stim because of how much I love Data), comfort a friend, read academic texts and Shakespeare to prepare for uni, go buy some bread, sing and dance to stim, make dinner while still singing, and finish the day with video calling a different friend for three hours. Even the things that are more difficult are still stimulating enough that I can do them. And I feel SO accomplished and content in the evening. On a bad day, I plan to get up at 7am and actually get up at 2pm or later. I once had one in the winter where it was already dark again when I got up. It's not even that I sleep so long, I just can't find the motivation to leave my bed. I barely manage to eat enough, because I have to prepare the food first and every single movement is exhausting and slow and it feels like I am moving through water with weights on my arms even though my body is, technically, fine. Even if I want to take a walk, because I LOVE my walks and they always make me feel better, I often don't even make it out of the house. I can't concentrate on anything, no matter how much I love the thing I'm trying to focus on. Deciding to do and then actually doing a thing like opening Discord, choosing a playlist, and pressing 'play' can take five hours. I sit on the floor in my room, in the same spot, the entire day. Things outside my reach may as well not exist at all - if I can't reach my cup, I don't drink anything for hours even though I am thirsty. I forget to pee until my body is in pain sometimes. I scroll social media despite not enjoying the content, until my hands hurt, and even if I manage to put the phone down, I am unable to find something else to do so I just pick it back up. Having even one single thing on my to-do-list, even if it's just a well-known task of five minutes, feels paralysing - to clarify, it's not even doing the thing, it's just knowing it's there, on the list. I want do SOMETHING but everything feels wrong and I don't even have the energy to get properly angry about it. I know talking to friends helps but I can't even answer one text message. Sometimes, I manage to occupy my brain with daydreaming instead of doom scrolling, but then I sort of disappear into the daydream and can't stop for hours. And I feel guilt about ALL of this and don't have the energy to explain to my brain that I don't need to in a way that it understands, even though I KNOW, from experience, that it can. Now, these are, of course, extremes, and both occur comparatively rarely. If I functioned every day like I do on a good day, I would probably be the happiest, most competent uni professor that has ever existed by my mid twenties, sewing my entire wardrobe myself, regularly talking to my 300 friends and fluently speaking, like, ten languages. If I functioned every day like I do on my bad days, I would probably be unable to stay alive without someone helping me to eat, drink and pee regularly every day. I would most likely not be able to have anything that the current economy would deem a career, and I would maybe manage to have between one and three friends I talk to very rarely. None of these extremes are 'objectively' good or bad or unrealistic for everyone, but they are, currently, both extremely unrealistic FOR ME. So, it wouldn't make sense to act as if they were achievable or certain - I shouldn't strive for reaching fluency in a new language every year, but I also shouldn't feel like I need to completely stop working towards my eccentric professor career goals just because I can't work towards them on SOME days. It's all on spectrums (spectra?), like many things are. I am actually fairly happy with most of my personal spectrums at this point, and I hope, if anyone has read this far, that this was helpful, or at least entertaining, and that you are or will be happy with your own spectrums as well :)
I'm so sorry you're feeling extra badly, but grateful to feel seen a validated and to see content created on a bad day. Thank you for being vulnerable and being kind to yourself!
This video did definitely help me as I've been feeling so guilty about my bad days, about not posting enough and not being productive. 💕 Thank you for posting it. Going to try taking things as my own pace and forgiving myself a little more
Dog [not sure whether it is Walter or Tilly] is there for you! She/he is noticing your every move and cuddling in close. She/he is very empathic. Beautiful little dog. Sweet.. ps: Can we have a video all about Tilly and Walter, please?
I had to give up social media because the comparison happened even when I wasn't aware of it. It's been super helpful for me. Although not necessary for everyone.
Jessica and Claudia, you don’t realise how your words impact people in a positive way. To know that people who follow you, feel comforted in the knowledge they are not the only ones who feel they way they do. You two bring smiles back on people’s faces and positive thoughts to enable them to fight their own battles, physical or mental. ❤❤❤
I don't usually comment videos, but not only was every message something I really needed to hear, but as someone with eds and pots who recently got covid, when you grabbed your elbow after coughing, I felt every bit of that. Solidarity with you, Jessica. And thank you both for the uplifting content. You have saved me on rough days more than I can tell you. Thank you.
Watching you as i'm dealing with covid a second time so i can empathize with how you must be feeling. Sending healing wishes your way from the middle of the usa.
I’ve also been sick for weeks, you have my empathy. I’ve been bedridden. I’m also disabled with chronic illnesses and I’ve been hit in the face (AND CHEST) too. Get well soon ❤❤❤
So true that you shouldn't judge strangers by the one encounter you had with them, I always try to give people the benefit of the doubt. I hope others are like that for me too. I mean, I'm generally a nice person but 12 hours of travel, no food all day, and a missed train was the reason I told some fools who were bashing their way into the air train to "Just fucking wait!" when ordinarily I would have kept my annoyance to myself. Being "Hangry" is a real thing!
❤Sweet Jessica, thank you for making this video. I hope that it opens people’s eyes to the different sides of living with debilitating chronic illnesses. Others (even those who are fairly close to us) rarely know the full extent of our suffering, or what the after effects of activities (large or small) can be. In the same way, we should not assume that we can judge another person. One action, one conversation, etc. will not inform us of the complexities of their life. As I lie here in bed, feeling awful from multiple chronic illnesses, I am thankful for your courage and how generous you are with your life. Keep telling your story and being the lovely person that you are.
I find these types of videos of yours really endearing. They help me to be kind to myself, and they help me feel more connected to others. I also generally love the message that a person's worth isn't tied to what they produce. Thank you for showing us this side as I know it can be hard. Take care and rest as much as you need!
I hope you feel better very soon. I have a chest infection as well with that annoying cough. Mine has just started. All my other disabilities(none the same as yours) keep me limited more often than not but I like you choose to keep moving forward everyday. I agree, never compare yourself to others, your journey is yours. Love seeing Claudia always. You two make a wonderful couple and Rupert from what we can see is growing up so handsomely too. Loves to Walter and Tilly as well. Much love ladies!
I also have infections so you’re not alone. I hope we both feel better soon, and I completely agree with everything about “your journey is yours” as well. Have a great day 💜
This video is brave and important, so thank you, Jessica. Even though I say this to people, it's hard for me to remember. I constantly drive myself to keep working, even though my body is yelling at me to stop, because I think there's some amount that I 'should' do today. I'm very grateful for your generosity in sharing this, because I know it's not easy. Yay, you!
Very much needed this video today. As an autistic person, my executive functioning isn't exactly spectacular. I feel like it's been worse than usual lately, but who knows, definitely not great to begin with. Anyway, I've been unintentionally comparing myself to my peers quite a lot these last couple weeks, and I've just felt like I'm not doing well enough, not trying hard enough, that I should be able to do better. I do know that I'm doing my best, but that just doesn't feel like it's good enough. I brought this up during the autism support group I go to at my university, and we had a sort of similar conversation, about how well we've managed to do in our classes academically but how that doesn't portray how much of a struggle it is for us to get those grades. It was more about that than comparing ourselves to others, but that's also super important and probably something we should talk about.
Thank you YES, I am also autistic and I ALSO feel like it's been worse lately (my theory is that the pandemic in general has stressed is all to the point of exacerbating the negative stuff) and I have a really hard time not only comparing myself to my peers but comparing myself to MYSELF, five years ago. I think of what my routine was like give years back and go "why can't I do that anymore? What happened?"
@@WatashiMachineFullCycle Absolutely, I compare myself to my past self all the time. Like, "oh, I could do this last fall, why can't I now?" Or looking at how much I managed to write in middle school and high school. I think my executive functioning has worsened due to the stress I put myself under in university. It's just so frustrating and so hard not compare to others or your past self.
so glad she shared this. good reminder to me that no one is totally perfect all the time just because that's what they show the world. it reminded me a lot of What Is A Spoonie? // The Spoon Theory she did 5 years ago. and yes I still remembered it. 5 years later. it's that good. because when the world makes me feel like i'm literally trash. luckily she's here to tell us why we're not. and for that I will be eternally grateful.
Definitely needed this, especially today. hEDS,POTS, and fatigue, and now lingering covid from last week on top of that. Sent this to my zebra friends too! Now go rest and go back to no talking, just signing!
Ouch..my chest hurt every time you coughed or breathed in after a cough.❤️ Every cold I have goes straight to my chest. You explained how it feels when coughing so well; shards of glass, check☑️🫤 Thinking of you. And although it feels like it never will go away…sometimes you really do need more than a month before you get better. It will end…just takes longer than others.
Ok so this is something I say to people all the time!! Just because I can do something one day doesn't mean I can the next.. I'm currently in therapy for complex OCD specifically for contamination. I did a experiment with 2 jars and some marbles. Ocd jar and I win jar! I put a marble in the ocd jar if I gave into a compulsive behaviour and my win jar if I didn't. I do this daily and track it. It's now a very nice way to show people just how different my days can be. The exercise also benefits me as I can track my progress. I have physical issues that effect me on the daily but I thought this was a realy good example that shows day to day struggles in a visual way. Hope u feel better soon hun 💕
Sick in bed or dolled up to go, you are beautiful, inside and out. Sharing your vulnerability and low moments is painfully brave. And inspirational. Claudia is the best wife, ever. Love your videos!
Thanks for such a chill video! I'm in bed today (more from pure exhaustion than anything) and your videos are always like meeting a friend for a quick, cozy chat. Hope your infection goes away soon!
Your videos are literally water in the desert for me. I have several chronic illnesses, and chronic pain from fibromyalgia. On top of finally partially coming out in my 30s, there is so much of your content that I relate to and am comforted by. You and Claudia are my ultimate couples goals! ❤️
My SI is very unstable causing severe pains and cramps. To get through the pain, I grab ahold of the well wishes my community send me. They warm my heart by keeping me company. Community is everything. Thank you for being part of my community.
I hate it when people say how well I am doing. What they don't see is the fact I haven't done the dishes or vaccuumed for a couple of weeks because all I do is what they see then go home and collapse. I have a virus and at the moment my goals are feeding the kids and washing dishes. I really miss lockdown. I had so much more energy. I so felt for you at about 15 minutes you really looked in pain.
I had a really bad day yesterday. Some random person gave me a compliment on what I was wearing. One sentence in passing. It was the best thing of that day. They have probably forgotten that already and they probably thought I was feeling really put together which I wasn't. So both: They saw one of the best parts of me that day and they made the best part of it, too. And we never realise it's that easy to be seen as better than we are and to make someone feel much better without doing much at all.
As a person with garbage, asthmatic lungs who is dealing with post covid inflammation, I feel you. Good lung days are worlds away from bad. I hope that stupid infection goes away soon.
Thank you so much for this video- I *really* needed to hear what you said. I had a chest wall resection to remove sarcoma & osteomyelitis on 8 December 2021 (after, at that point in time, 7 months of constant bone agony/near complete loss of function & a year of issues) & had my right collarbone, right 1st rib, right sternoclavicular joint & a large chunk of the manubrium, all the involved muscle & connective tissues, & the involved lymph nodes along the right side of my neck all removed, & then the muscle from lower on my chest wall rotated up & stretched to cover the whole area. Post-op, I had a deep drain that came out of my chest right between my breasts for just shy of a month, & my right arm was immobilized for a month. I also had a PICC line in my left arm & did IV antibiotic infusions at home for 8 weeks. When I finally got my diagnosis in October 2021, I had been dealing with the worst & most debilitating deep bone pain in my chest/right shoulder/back/neck/jaw for more than 8 months (in addition to the sarcoma tumor, it was discovered during the resection that I had MRSA osteomyelitis all around the tumor & both tumor & infection had been destroying the bones & bone marrow for all of that time..) & bc the shoulder MRI I had in July 2021- when my family had finally forced me to go get seen bc due to severe fear/anxiety/distrust, i developed the phobia after my mother’s death in February 2016 & I had not been to the dr since..) had shown nothing but the mildest tendinitis & I had been treated like I was just drug seeking (but I finally was seen by drs at the start of October 2021 who actually looked at the giant mass on my right upper chest & the enlarged lymph nodes that had been there since before I was seen in the summer & freaked out, ordered a CT & blood work, & all that ended up with my diagnosis within that month), so I had pushed myself to just live with it.. so by the time I had the resection, I was physically & mentally exhausted from the pain & the fact that my body was actively destroying itself. But I convinced myself/allowed myself to be convinced that after the surgery & when it came back that I wouldn’t also need radiation, that I should be right as rain. I pushed myself to be “healed” and to be back to “fully functional” as quickly as possible post-op, and “put on a positive/happy face”. I was determined that I would be all better. And even though I wasn’t, I turned down PT because I had already pushed myself into using my right arm/shoulder/collarbone, etc, & I wasn’t going to admit any weakness. Because I was the lucky one, right? All it had taken to “cure” me was the one surgery & even tho I had the 8 weeks of Iv antibiotics, it wasn’t like I had to have chemo/radiation & so I wasn’t sick anymore. I bought into this whole toxic positivity crap that seems to go hand in hand with cancer diagnoses & hid the majority of my struggles over the last year because I wasn’t supposed to still be sick. And while I did *look* good- I was so active & doing all of the things, etc etc etc- I wasn’t. I’m not. I had a big portion of my upper chest/collarbone cut out less than a year ago due to sarcoma & massive infection, & my immune system has been in the tank the whole time- I was recently diagnosed with Rocky Mountain spotted tick fever. I may look good, but that doesn’t mean that 4 out of 7 days for the last 6 months have been really really bad days. I’m having more/additional/new issues similar to what I had before the resection in another area of my chest. And It’s exhausting that I can’t stop myself from beating myself up mentally over it & struggling so much when people are constantly telling me how good I am looking & that I feel like I have to hide the fact that I’m not well/having these bad days…
I like that Claudia hijacked the video. It sort of makes it two videos and honestly it’s every bit as supportive as everything else she seems to do. I’ve always been very impressed that she seems to lift the weight of ten people while taking care of so many others whom display the same level of capability intelligence and talent in the face of any challenge or task. They are astoundingly impressive people and they are a good example of taking pleasure in peoples successes. Whether it’s tiny or utterly monumental most of what they do is a triumph and it’s only one of many positive perspectives they offer. If there is one word that stands out the most to me it’s usually “impressed”. Yet people still feel bad about wanting some time to themselves even when they have stacks and stacks of trouble. It’s a weird feeling to have really high standards for yourself, but it’s certainly not just yourself that influences those standards. It can sometimes even be a response to the toxic sides of things Claudia is talking about and it is really important that we understand what each other might go through and try to be good to each other. Making the world a little less cruel can be alot easier than you think and you do deserve to know that if you’re trying you are more than good enough.
It is nice watching this while I fight a migraine and wait for my IV infusion. Hope your doing better and here is to appreciating both the good and bad days.
I've got Spina Bifida and Hydrocephalus and I've had people call me a liar or a bludger when I've discussed my bad days with others. They think because they don't see it, it doesn't happen. But really, they only haven't seen it because I simply can't leave my house (more specifically my bedroom or bathroom) on those days. If you are seeing me out somewhere, it's a good day.
I like the idea of nurturing ourselves to not be ladder kickers-- to be okay with someone having it better, we should not want people to have to deal with awful stuff, like student loans. And if we can't want that for purely kind reasons, we can pick the selfish/petty reasons like because they might help us in some way, or our children!
I'm having a rough week and this really spoke to me. I do compare myself to others of course (and so you sharing this is so kind, thank you) but the hardest thing I often experience is believing I will never be better, that my best days are in the past. I try to remember everything temporary and we don’t know that future. Also I loved it then Claudia hopped into bed with you and put her arm around you. We got to see you to just chatting and exchanging ideas. I’m grateful to have witnessed such a sweet moment. I hope you feel better soon.
Ive been newly battling chronic illness for a year now, which unfortunately means I had to give up my lovely caring job at a resthome and can barely work. Meanwhile watching all of my other friends begin to go to uni, get promotions, move out, etc, and seeing your video makes me feel so much better about how much I can and cannot do anymore. This just made me feel better about myself and I thank you for putting this out on the internet and also just becoming an extremely comforting channel to watch on good and bad days
Feel better soon, Jessica. I feel you. Mine is more struggling with keeping things together while caring for two children on my own. Missing a lot of activities. Just because it's too much sometimes.
I have chronic migraines and wow I do feel this. Sometimes I have to take a day off from work because of the migraines and if it gets to be too many days in a row, or happens every few weeks, I start to feel so weak, because wow shouldn't I be able to /do/ things? I also try to always put on a good face, so you don't always know if I'm /actually/ not in pain. Creators like you are sooo so so so necessary, Jessica. Thank you.
This video made me feel SO much better. I have chronic pain, and I work as a nurse in a hospital. 12 hour shifts on my feet take it out of me. I love caring for others when they are not having their "good days," but I often compare myself to my coworkers who seem to do so much on their days off. I have been having a bad pain week and am on the couch on my day off with my heating pad feeling like I should be more productive. This video is what I needed to see today
This is so important for me today and I'm so glad your video came out when it did. I've been struggling with the addition of possibly another chronic condition on my list of chronic conditions and I feel absolutely horrible. But everyone online is up and doing, as are many of my favorite youtubers with chronic conditions. And I think to myself, but they're all getting up and around why can't I? I had to remind myself through your video it was okay for me to suddenly just not want to anything. To take a break and go nowhere. Or use my cane just because.
I started following you because i stumbled on your videos because i had been watching some videos on vintage clothes. I was diagnosed 2 years ago as being on the autistic spectrum but also last year i had a knee implant implanted and the recovery process was gruesome for me. I have also chronic depression and it was all too much for me. Your videos give me often great joy but also help me because you are so open about your disabilities and how they affect your life. But i also looooovvveee your look, the clothes you wear and that ypu dress like this because it gives you joy. I love therefore the videos like i saw earlier today, where you wore that blue dress with brown i think, the gloves and the straw hat. But also your upbeat personality. Thank you for all that! You indspire me often when i feel low.
I don’t believe I have ever commented on a video by anyone, but I think this video is better than fantastic. I think this message is something everyone needs to hear. Thank you so much for making this, and I hope you feel better so soon.
Thanks Jessica. I'm lying in bed as well trying to stay in the moment. I have ME (the disease nobody has heard of that you made a lovely video about a few weeks ago). I've been bedridden for 10 years, but on Monday I have an appointment at the Mayo clinic. It's good if I can get some help. However, I'm on the verge of a panic attack thinking about the long car trip, the hotel, the tests, and everything involved. Plus, my cynical brain is telling me it will be a waste of time because nothing I've tried in 22 years of being ill has helped. You made me feel less alone. ❤
Thank you for your realness. I suffer from fibro and I just had a difficult tooth pulled so the constant pain and fatigue are getting to me in a bad way. I had to watch this in two parts because I'm struggling to do anything normal. After watching your video I'm thinking less harshly of myself and trying to tell myself it's ok to take care of me. Thank you again for the comfort you have given.
Thank you so much for showing the honest reality of being chronically ill. I have RA and run a design studio. Living in a small town, people only see me on my good days. They do not see me struggling or realize that seeing me up and well is a good day. The bad days are quiet, not talked about. The internet and you have bolstered me up to manage the bad days. Keeping up one's spirits whilst handling repeated bouts of ill health can be a challenge. Thanks for your honesty and constant inspiration. It has helped me many times when battling my confused immune system.
Dear Jessica, my heart goes out to you. I wish you a speedy recovery! I'm also struggling with chronical illnesses and it feels so heartwarming to hear someone else, especially from a person I look up to, saying these words. We all have our bad and good days, and some of us have more of one of them. And it's so sad when people judge each other strictly by the days they see most.
Thank you so much for sharing! I have been struggling lately with some mystery health issues and it's good to remind myself that people mostly post on their good days, and to stop gaslighting MYSELF by judging myself by my good days.
This is such an important topic for people with disabilities and chronic illness. If you see me out in the wild, I am having a good day. For every day I can get out and interact with people, there are at least five spent mostly in bed, never venturing out of the back half of my house.
YES.
Exactly! Even if I’m not having a good day but I must go out, my chronic pain will cause subsequent two/three days of increased pain from my normal.
YES YES YES!!!
So true!!
Yes! Mental illness too
John Green has boiled this down to "Imagine others complexly." It's a lovely idea to put into practice.
Imagining other people complexly has genuinely been a life changing mindset for me. dftba
oooh! that's good advice! thanks for sharing!
oooo when did he say this? I love the green brothers
@@ratboy22222 I'm not sure when. Might have been in a book, and I think he made a video on it. Complexly is the name of their company too, so it's been around a while.
@@ratboy22222 I just did a search at Nerdfighteria Dot Info for "complexly" on the vlogbrothers channel and the earliest hit I turned up was in October of 2008, but it's clear from context that the concept had already been around a while ("Hank, I gave my entire speech about the importance of imagining other people complexly...with, like, a massively unzipped zipper").
Stumbled onto this video while lying in bed trying to figure out how to deal with absolutely debilitating anxiety. Thank you.
Me too, Jane, you're not alone
Been there too. Take it one breath at a time, try to be where you are, not whatever time or place your mind is taking you. Take care!
Welcome, I hope this has helped you, enjoy watching more videos
Get well soon
@@wonderingalbatross2400 I know you mean well but as someone who is chronically ill and disabled I don't get well. It's better to say something different like "I hope you feel better soon", it's a small change that makes a big difference :)
Mental issues are also important to keep in mind. I am autistic. So my ability to do things isn't just a matter of my physical disabilities and chronic illness. My autism is also a factor. So I try not to judge myself based on other people. Not to mention that other people may have supports that I don't. I don't have a caregiver. I have to do everything for myself. So I am really proud of the fact that I can buy and prepare food, go to medical appointments etc. Sometimes just doing the basics is commendable.
You are doing brilliantly.
Attending medical appointments needs to be awarded with some kind of medal, they make it so flipping hard! I discovered by accident that I have an appointment in a couple of weeks which is really important. Fortunately I can get the time off work and get myself there. But it was only luck. They’ve switched to online notifications only. But sent the appointment message before the one saying they switched. So I was waiting for a letter. Not a random message buried in an app I never use.
So you managing your appointments on your own….epic. Well done you.
This is hard. Harder than it needs to be. And you are doing well.
Heck yes it is! Its so important to celebrate the mental endurance it takes to be chronically ill and maintain boundaries. ✨❤️ Having decision fatigue and explaining constantly why you must decline, that’s why my best long term friendships are people who pick right up where we left off no matter how long it’s been. And people who have common special interests so we share photos and creative ideas.
JennOscuru, all my family are Autistic too. I think you are brilliant. My husband, both sons and I have a strict routine. If anything changes, it is a huge freak out xx
@@dees3179 I am unemployed. So that gives me flexibility. But I still struggle. I have to call to make some appointments and haven't done it yet. It's so much easier when they call me.
Well said
Sick or not Claudia calling you out for the hair washing was excellent. Love Claudia always keeping it real.
also a great reminder that while it seems someone may have it together, a lot of time the support they are receiving is invisible to us
The is a really specific moment in this, around 15:35 where Jessica pulls a pain- face, and it looks exactly like my mum when she's got a migraine (which is frequently 😓) and it just broke me a little bit because I totally understand how this expression is a tiny fraction of the pain going on inside, and I just want to send you huge gentle hugs Jessica, and all you other chronic illness havers 🤗🤗🤗
The hisses of pain too. Bless.
Thank you so much for this! I've had a chronic illness since I was 8 years old, and I had parents who wanted as normal a life as possible for me and sort of encouraged me to put on a good face, so I learned at in early age to do that, thus fooling a whole lot of people into thinking I wasn't in a lot of pain all the time. Fast forward a decade or two to my adulthood, and I get doctors to whom I tell I have debilitating chronic fatigue and they act sort of like they take me seriously, but then my husband tells me later that no one would know because I act like I'm feeling so well. And I do it unconsciously. So at times when I'm having a fatigue crash, especially when I need my husband to drive me to an appointment, I ask him to come in to the appointment with me so that he can tell the doctor that what they see is not what's really going on with me. I think that has helped sometimes.
I relate so well. I have not been sick than only few years, but I still want to hide any hurt like a sick animal...I am afraid to show vulnerability and that I won't manage alone. So I am all chirpy chirpy and use the last bit of energy to convince that I have nothing wrong with me. It is frustrating, but more like an instinct than anything else.
Same. It's taken me so long to realize that I'm hiding it. I'm hiding/masking it from myself. And then I think I'm being open and telling people what's going on, and they can hear me say it but not *see* it because I don't act like it. And then trying to "act like it" feels like I'm pretending to be sick when I really am. I just don't know how to show it.
Thank you so much for this video! It’s cheesy as hell, but I had a therapist say something along those lines- ‘don’t compare other people’s highlights to your own blooper reel’. That phrase keeps me sane when I’m on social media now.
Sounds like it helped you become even more self-aware . Just don't let that awareness be critical.
yeah, nice one. I've heard it like this: don't compare other people's outsides to your insides... What we show others and how we truly feel are two different things!
My heart felt like it was going to explode when Claudia casually draped her arm around Jess’s waist. Love these 2 ❤
I’m dealing with depression. Some days all I do is sleep, let my dog out in the yard and take meds. Then there are several days in a row I act like a normal person doing errands and stuff around the house. I understand how you feel. I have had bronchitis several times and it can really hurts. I hope you feel better. I’m glad you have Claudia to be there for you.
I've been thinking about this for a while. I often feel like I'm pretending to be or not to be chronically ill, because I'm either disguising my bad days or, if I talk about my bad days during a good day, it sounds like it exaggerating them and putting them out of proportion. I've been wanting very much for people to not see me as split down the middle like that, trying to learn how to reach out and share all kinds of days, to be able to revel in feeling good and share what the bad times really look like, and still feel like someone with agency during them.
I completely understand where you're coming from
I am going through chemotherapy for breast cancer. And I really hoped to work more than I have been able too this week. Your video reminded me sometimes that is just how it works out.
Everything I did during chemo was wrong and I had to do it again afterwards. Errrrr, hope you are doing better than I did. Best of luck.
@@dees3179 after the first 6 treatments my tumor shrunk by half. My cancer team has connections to a top research facility in the country. I expect to be cured in 10 months.
@@dees3179 You have a reason = chemo brain ! Most people screw up without it. lol
@@RavenBlaze best of luck Jen, that sounds very positive.
In Denmark a group of chronically ill people have started a thing called “chronic influencers” and we share the good and the bad on insta and Facebook ❤ I started shading myself some years ago but Instagram bullied me too much technologically with not letting me have an account for my art and one for my illness stuff seperately but switch between them. But if one doesnt have that problem I recommend ❤
This was a very validating video - I’m autistic, and even before I knew that I knew I just could not do things other people could and felt so weak because of it. Now I know I’m super strong because I do so many things despite my disability! I may order my groceries delivered 90% or the time, and stay in my pajamas and work from bed most of the time, but I also lead meetings and go to the gym several times a week, and that’s strong too ☺️💕
oh thank you that is a wonderful way to think about sensory overload and how much it makes me feel slow and weak
The sarcastically best part about being autistic but not diagnosed until adulthood is that you're being compared to everyone else's good days.
Your accomplishments, despite your disability is a definite Plus ++. You sound like the person during covid that worked from home, so you have persevered against odds very well ! 🌟🌟🤗🤗👏🏻👏🏻
@@brennaweaver3974 O god this is SO true! I never thought about it like this but since childhood/the 90s people tell me that not only do I need to „use my full potential“ but also that I just don‘t live up to other‘s potential and that because of this I am failing at life! the perks of being recognized as „gifted“ at four with people just willfully ignoring all signs of Asperger/ASD until 32 😵💫 I have only allowed myself to give myself some grace since around last christmas and let‘s just say it is a process with some of my social circle fighting me every step of the way and others wildly supportive 🤷🏼♀️
I wish I had your videos back in high school. They would have not only helped me get through my toughest moments, but I think they could have helped my parents and more specifically my dad, understand me. He would say, "if you can lay in bed and watch RUclips all day, why can't you go to school?" and I tried to articulate why I can do one thing but not another, but I just didn't know how to.
Ughhh that is so frustrating!! I’m so sorry he didn’t understand. Just the difference between laying and sitting can be so extreme. There are days I can stand for hours while baking and there are days I can’t even sit. Today I had to lye flat all day. I just didn’t have the strength to sit up.
This reminded me of how I always felt that if I was home sick from school or work that I shouldn’t do ANYTHING remotely fun, because I felt like I had to justify staying home to myself or my parents. I think your comment is a good reminder that even if you are feeling poorly, it doesn’t mean you have to suffer.
I became bedridden and solo back before the internet existed. I didn’t have staged lives on instagram to depress me. But neither did I have videos like yours to make me feel less alone in what I was going through. Bedridden and solo watching this now. (ME/CFS is such fun!) Thanks for sharing ❤
Wishing you good rest and clear lungs!
You sound very self aware. I hope you see yourself positively.
I became I’ll in my childhood before social media, but I always wonder what it would be like to be chronically ill without social media as an adult. I think I’d probably feel more alone, because now I at least know other chronically ill people are out there.
@@KindCountsDeb3773 you too, thanks!
@@findingbeautyinthepain8965 ugh well I can’t imagine your scenario either. Mine was extremely isolating. It does help to have contact now with people going thru something similar.
Thank you Jessica, it is so frustrating when people say "but you don't look sick" for a 64 year old chronic pain sufferer who has had chronic pain since my early 20's it really does get boring & annoying. I wish you a very speedy recovery. 💛💛🧡🧡♥♥💜💜💙💙💚💚🖤🖤
I didn't know how much I needed this. I don't usually write comments but I just wanted to say thank you for sharing this, I've been feeling pretty down on myself for being sick lately and I feel a lot less alone when I see stuff like this ❤️
❤
I also have a handful of chronic illnesses and am sick. This video made me feel like I wasn't hidden away in my room alone but hanging out with my sick friend. Thank you for that!
I'm on 8 hrs sleep in 3 days, diabolically messy home, chronic illness playing up, and about to start another round of IVF meds. I needed this to make me feel validated enough to just eat some crappy noodles and play a video game rather than try and somehow make this a 'good' (basically a 'productive') day. Get well soon and keep making your wonderful unfiltered content 💛
First of all, I'm so sorry you have such a terrible lung infection. I hope you get better soon ❤
Secondly, this video was so needed. For so many reasons. People that don't have chronic illness/disability need to see this video so they can understand that when they see someone out and about having a good day, they are seeing them at their absolute best, and unfortunately that is not their day-to-day reality.
Those of us with disabilities or chronic illnesses needed this to remind ourselves of the same thing, and not to compare ourselves to others on their good days.
I'm feeling this so much right now. I have a five-day Holter heart monitor strapped to my chest, and of course, the days I've had it on are some of the best I've had in over a year. I'm afraid that when my cardiologist sees these results, he may think that I don't need the treatment I'm scheduled for, when I absolutely do - he's just seeing an unnaturally, unexpectedly good moment in my health, which is very uncommon for me! Seeing only the "good" moments could literally deny me care right now, and it's throwing into sharp relief that it's so vital in so many ways that chronically ill folk are believed when we articulate when we're doing poorly!
I hope you get back to baseline soon, and are able to kick this infection with as few lasting effects as possible! 🌈
I just want to appreciate how much effort you're putting in when you're feeling so terrible. Even if it's just you doing what you can, it's still a lot of effort and a lot to share. Feel better!
indeed, i do feel better watching you share about your bad days. not in a "harrharharr (Mr. Burns laugh) I´m better than her!"-way, but in a "I´m not alone with my bad days" way. i hope you feel better soon!
Thank you for the mr burns laugh aaaahahahaha I have been watching the simpsons while I lay in bed a good bit of the past weeks and I genuinely think its making me get better
Thank you for something I sometimes forget. I have metastatic breast cancer. It’s not that I feel unhealthy, it’s that I am always -always- so very tired. I have days where I’m able to do things and days I’m lucky I can get out of bed & get dressed. My problem is on good days I over do it. I still can’t figure out how to pace myself. And when people see me having a good day they say, “you’re handling it so well.” No. No, not really. Just not good at not being upbeat when others are around. Hope you feel better soon. ❤
Such a good point that’s so hard for everyone to remember - us as chronically ill or disabled people ourselves AND those not experiencing it. Even the editing you choose to make a point out of your coughing but that’s only the most obvious symptom. Depending on the day I find it either inspiring or demoralising to see. Nothing is different on either day except our perspective.
Thank you for sharing this
Sometimes it is a struggle to be kind to yourself. ❤
I know these thoughts very well, thank you so much for commenting about it! Sometimes I don’t even believe myself regarding really bad moments, just the moment I feel slightly better …
@@jennifers5560 So, so much of a struggle
@@paulasturm9893 Right??? I have a few good days in a row & my brain starts thinking maybe it's over, maybe I can finally get back to myself... but it comes crashing down eventually & I have to remind myself that this IS me now
Thank you for sharing this. Having autism, anxiety, and depression means my hard days don’t have a visible reason. It bugs me when people judge what I can do and disbelieve me when I say I struggle. Hope you feel better soon 💕
i was just talking about this! visited family and they all think i’m well again because they saw me at a few dinners. very difficult experience. thank you so much for bringing positivity and encouragement to my life
Claudia is a lovely person! It's a great feeling to help someone you love, and Claudia seems to be pretty great at it. (Though naturally I am judging her by her good days, the ones I am privvy to - but it's a good example to attempt to emulate)
Really appreciated what Claudia said at the end! I've been learning aerial hoop for about a year and it's been incredibly hard with my disabilities. I started with basically no muscles at all and I find it so much harder than everyone else. It's really difficult to focus on my own progress and not just feel rubbish because everyone else can do so much better than me. I feel the same as an author, I often look at people who win awards and have huge success and feel like I'm not good enough.
I like the idea of instead thinking about how I can be a positive presence and if helped anyone or made them smile etc, to take my mind off comparisons. Thank you!
Just found out what aerial hoop is because of your comment, and it looks really cool! So many people just don't do the things they want to do because they're afraid of failing (I've fallen into that trap myself), so seeing someone try so hard at something for a year and counting is really amazing. It makes me want to keep trying to get better at my own hobbies. Thank you for sharing, I wish you nothing but the best in your endeavors
I'm a pole dancer and disabled as well. It can be super challenging sometimes because there are moves that are just not possible for me to do with how my body works, but at the same time, it's a great opportunity for creativity because it gives me a chance to discover new entries and ways to get those tricks while working with my physical limitations. It's made me a better instructor because it forces me to be adaptive and innovative.
Good luck with your aerial journey!!
I've been learning pole for about a year and in a similar situation. I find it challenging to keep a positive mindset while progressing slowly (and sometimes regressing) while everyone else seems to be so far ahead. I'm sorry you're also having that challenge, but I find it comforting that I'm not the only one who is persistent with learning a fun and active skill, even if it takes 10x as long as some others. Aerial hoop sounds cool!
@@BelleChanson0717 The fact that you wanted to do this and ARE, is such a positive thing ! You took on a challenge and are doing it !! Just to start is Badass!
I really needed this today. We're sick today and have been struggling for a while, and keep thinking recently about how it hurts that the people around us mostly don't know, that when we go out it's only when we're able to and that's how they see us.
I had an injury at work and was given a less physical task. Some people judged me, and one even yelled at me because I kept reminding people who didn't know that I was injured. I DID so because I was self-conscious and worried people would be judgmental, and some were. I was always a good worker, so his anger was hurtful. His anger was so far away from what I would be like in his situation. Just have to let it go.
@@KindCountsDeb3773 Exactly. We can’t let others false views of us became how we see ourselves, whether it’s negative or positive. There are actually a lot of people who see themselves very positively because the people around them idolize them. In reality, these people are terrible humans, but they can’t see it. So internalizing bad or good perceptions of ourselves to much can be dangerous for our mental health.
@@findingbeautyinthepain8965 Yes, it doesn't help that I have a "pleaser" mind set. I'm retired a long while and it still bothers me, when work is brought up or some other trigger. But that is rare, so I'm grateful.
The mentality of I suffered so you should too is something I don’t understand. If I suffered, I don’t want someone else to suffer in the same way. I try to help others when I can. Literally just kind words can help.
As someone who pays for my good days with bad weeks I feel this!! Thank you for talking about it!
I know there’s more than one person that was helped with this video, but this really helped me. I’ve barely been able to leave the house or see people since 2019. Today really hit me with feeling like my life is meaningless. This helped me so much. I need to work on being ok with just being. It’s hard. Thank you for this. 💜
(((HUGS)))
I know this feeling. I'm in the ATL too, btw, if that is what your name stands for (Atlanta)? I lost my mom in 2020 and haven't felt ready to face the world since then. Very painful.
@@mygirldarby I'm sorry for your loss. I had so many agoraphobia issues after I lost my dad, but time helps. I hope that you can find some peace in yourself and know that the world can be kind, and even if it's also scary it does have gentle and beautiful things to do and see too.
You’re not alone. ❤
Who you are as humans together, and your presence on social media. You make a difference in my life. Jessica and Claudia thank you!
Thanks! i think this is an important lesson, and I have think about similar things Claudia talked about. I wish you well!!
❤❤❤
I actually had a terrible day (xingjing ping just get his president for life in China, I can't help but to feel afraid and bleak about my future and our future); Nonetheless, calming and heartwarming to see your guys together. Everyone seems to have their own struggle, hopefully, we could be more sympathetic and learn strength from one another. --peace, see you shine again.
Thank you so much 💞
You made somebody feel better for sure! Me! I'm dealing with post-covid on top of my usual stuff (RA, CFS/ME and post brain injury seizures and other lovely things) and even though I have deleted social media specifically because I wanted to feel less rubbish, I still see people around me and how they function in ways I'm not able to and it makes me feel very useless, powerless, demotivated at times. In the "I am trying so hard and yet I'm failing" kind of way, maybe more in competition with fictitious healthy self more than with other people.
ANYWAY, my point is that your bad days videos help me immensely. They help me accept over and over that I am sick and I am not choosing to be unproductive.
Thank you, Jessica. Thank you for all the gentle reminders that it's okay to be disabled and take time to care about your needs. Hope you feel better soon, sending all the spoons I have left
And to all of the others having a day as well.
I watched this while folding laundry (very slowly) in bed :) I really appreciate what you said in this video, I find myself frustrated sometimes when people around me don't seem to understand how terrible I feel sometimes, but I'm realizing I'm probably not communicating that to them very well when I just shut myself in my room at the worst times. I hope your infection and cough clears up soon!
I’ve always said everyone is absolutely different from everyone else. So of course no one else is the same. You don’t share the same body for one thing. From there the list just goes on.
I’ve been going through CBT lately and this part about “changing the thought” and “don’t compare yourself to other people” and I’m so glad these things are connecting. I struggled with like serious social media sadness lately too. Thanks so much!
It's good to hear YOU say CBT is helping you. I have had little results with it. Here's why : 👉🏻👉🏻 I didn't do my part with the therapy. I did not use it as a good tool. I am going to look for further therapies with my Dr. Your positive outcome helped me !
Thanks for a very important video! You two are lovely + inspiring (even on your bad days ;)
When I'm feeling depressed, my body put it's foot down and made me quit my job for three months, I enjoy watching videos which I would categorized as quite, gentle homelife. They normally have warm lighting and lofi music, which for me when I'm depressed high energy videos make me feels anxious and more exhausted. Which does lead me to comparing myself to those people subcousiously.
I have cut out alot of my social media in the past couple years since I honestly felt more depressed and anxious after being on IG and Twitter. I obviously still use YT, but I have become more particular on what I am watching.
I can relate a lot to this today. I’m also stuck in bed with what feels like the worst chest infection I’ve ever experienced and I needed this video so much. It made me feel much better about myself and reminded me to be kinder to myself when I need it most! I hope you feel better soon, sending love 💜
Hey, I’m also in bed with infections. We are struggling together ❤
(Also I hope all of us feel better soon I just got excited when I saw someone else and I didn’t feel alone)
These videos where you openly show your bad days as well are immensely helpful to me whenever I have a bad day, be it due to mental or physical issues.
They have literally gotten me through the worst day of my life, and eased the panic disorder that came after it. You always provide such a beautiful combination of personal experience, kindness and emotional support, and helpful thoughts and tools!
I would like to try and help as well by describing my own good and bad days for anyone who is interested :)
My set of regular issues is rather different from Jessica's: It's usually almost exclusively in my brain (various forms of neurodivergence) while my body is technically fine, but my range from good to bad days is also quite extreme.
In the hopes that it may be helpful, I'll elaborate in some detail.
When I have a good day and have taken my meds, I am able to do SO MUCH stuff from, bascially, 8am to 11pm with only short breaks for using the bathroom or eating.
What I consider a relaxing walk in this state is more like a small hike of around 3 hours, and I still dance around at home after it. I am able to focus on and create beautiful fictional writing for hours, or have a deep philosophical and moral discussion with complete strangers. I answer all my e-mails and messages quite quickly. I am able to go out to different places to run errands.
Uni activities are not only easy, they give me energy. My brain is ridiculously good at and enjoying tackling almost any academic problem, and it's using its full potential. I analyse and question everything with great skill and joy. I have so much love for everything and everyone, and the energy to show it.
In the span of one day, I can practise and/or use four different languages, listen to movie analysis podcasts and a Stanford lecture on biology, repair a t-shirt, watch Star Trek (and need a moment to happy stim because of how much I love Data), comfort a friend, read academic texts and Shakespeare to prepare for uni, go buy some bread, sing and dance to stim, make dinner while still singing, and finish the day with video calling a different friend for three hours.
Even the things that are more difficult are still stimulating enough that I can do them. And I feel SO accomplished and content in the evening.
On a bad day, I plan to get up at 7am and actually get up at 2pm or later. I once had one in the winter where it was already dark again when I got up. It's not even that I sleep so long, I just can't find the motivation to leave my bed.
I barely manage to eat enough, because I have to prepare the food first and every single movement is exhausting and slow and it feels like I am moving through water with weights on my arms even though my body is, technically, fine. Even if I want to take a walk, because I LOVE my walks and they always make me feel better, I often don't even make it out of the house.
I can't concentrate on anything, no matter how much I love the thing I'm trying to focus on. Deciding to do and then actually doing a thing like opening Discord, choosing a playlist, and pressing 'play' can take five hours.
I sit on the floor in my room, in the same spot, the entire day. Things outside my reach may as well not exist at all - if I can't reach my cup, I don't drink anything for hours even though I am thirsty. I forget to pee until my body is in pain sometimes. I scroll social media despite not enjoying the content, until my hands hurt, and even if I manage to put the phone down, I am unable to find something else to do so I just pick it back up.
Having even one single thing on my to-do-list, even if it's just a well-known task of five minutes, feels paralysing - to clarify, it's not even doing the thing, it's just knowing it's there, on the list. I want do SOMETHING but everything feels wrong and I don't even have the energy to get properly angry about it.
I know talking to friends helps but I can't even answer one text message.
Sometimes, I manage to occupy my brain with daydreaming instead of doom scrolling, but then I sort of disappear into the daydream and can't stop for hours.
And I feel guilt about ALL of this and don't have the energy to explain to my brain that I don't need to in a way that it understands, even though I KNOW, from experience, that it can.
Now, these are, of course, extremes, and both occur comparatively rarely.
If I functioned every day like I do on a good day, I would probably be the happiest, most competent uni professor that has ever existed by my mid twenties, sewing my entire wardrobe myself, regularly talking to my 300 friends and fluently speaking, like, ten languages.
If I functioned every day like I do on my bad days, I would probably be unable to stay alive without someone helping me to eat, drink and pee regularly every day. I would most likely not be able to have anything that the current economy would deem a career, and I would maybe manage to have between one and three friends I talk to very rarely.
None of these extremes are 'objectively' good or bad or unrealistic for everyone, but they are, currently, both extremely unrealistic FOR ME. So, it wouldn't make sense to act as if they were achievable or certain - I shouldn't strive for reaching fluency in a new language every year, but I also shouldn't feel like I need to completely stop working towards my eccentric professor career goals just because I can't work towards them on SOME days. It's all on spectrums (spectra?), like many things are.
I am actually fairly happy with most of my personal spectrums at this point, and I hope, if anyone has read this far, that this was helpful, or at least entertaining, and that you are or will be happy with your own spectrums as well :)
I'm so sorry you're feeling extra badly, but grateful to feel seen a validated and to see content created on a bad day. Thank you for being vulnerable and being kind to yourself!
This video did definitely help me as I've been feeling so guilty about my bad days, about not posting enough and not being productive. 💕 Thank you for posting it. Going to try taking things as my own pace and forgiving myself a little more
Dog [not sure whether it is Walter or Tilly] is there for you! She/he is noticing your every move and cuddling in close. She/he is very empathic. Beautiful little dog. Sweet.. ps: Can we have a video all about Tilly and Walter, please?
Love the "Edna Mode" glasses.👓 Please keep them!!😊😊
They were so random!
I had to give up social media because the comparison happened even when I wasn't aware of it. It's been super helpful for me. Although not necessary for everyone.
That’s why I like Jessica’s videos. She has “perfect life” videos, but she also has “my life is not perfect” videos.
Jessica and Claudia, you don’t realise how your words impact people in a positive way. To know that people who follow you, feel comforted in the knowledge they are not the only ones who feel they way they do. You two bring smiles back on people’s faces and positive thoughts to enable them to fight their own battles, physical or mental. ❤❤❤
Well said D B !
@@KindCountsDeb3773 thank you deborah
I don't usually comment videos, but not only was every message something I really needed to hear, but as someone with eds and pots who recently got covid, when you grabbed your elbow after coughing, I felt every bit of that. Solidarity with you, Jessica.
And thank you both for the uplifting content. You have saved me on rough days more than I can tell you. Thank you.
Watching you as i'm dealing with covid a second time so i can empathize with how you must be feeling. Sending healing wishes your way from the middle of the usa.
I’ve also been sick for weeks, you have my empathy. I’ve been bedridden. I’m also disabled with chronic illnesses and I’ve been hit in the face (AND CHEST) too. Get well soon ❤❤❤
So true that you shouldn't judge strangers by the one encounter you had with them, I always try to give people the benefit of the doubt. I hope others are like that for me too. I mean, I'm generally a nice person but 12 hours of travel, no food all day, and a missed train was the reason I told some fools who were bashing their way into the air train to "Just fucking wait!" when ordinarily I would have kept my annoyance to myself. Being "Hangry" is a real thing!
Thank you so much for this, people tell me all the time "you look great today!" and it's always awkward when I correct them
❤Sweet Jessica, thank you for making this video. I hope that it opens people’s eyes to the different sides of living with debilitating chronic illnesses. Others (even those who are fairly close to us) rarely know the full extent of our suffering, or what the after effects of activities (large or small) can be. In the same way, we should not assume that we can judge another person. One action, one conversation, etc. will not inform us of the complexities of their life.
As I lie here in bed, feeling awful from multiple chronic illnesses, I am thankful for your courage and how generous you are with your life. Keep telling your story and being the lovely person that you are.
I find these types of videos of yours really endearing. They help me to be kind to myself, and they help me feel more connected to others. I also generally love the message that a person's worth isn't tied to what they produce. Thank you for showing us this side as I know it can be hard. Take care and rest as much as you need!
I hope you feel better very soon. I have a chest infection as well with that annoying cough. Mine has just started. All my other disabilities(none the same as yours) keep me limited more often than not but I like you choose to keep moving forward everyday. I agree, never compare yourself to others, your journey is yours. Love seeing Claudia always. You two make a wonderful couple and Rupert from what we can see is growing up so handsomely too. Loves to Walter and Tilly as well. Much love ladies!
I also have infections so you’re not alone. I hope we both feel better soon, and I completely agree with everything about “your journey is yours” as well. Have a great day 💜
This video is brave and important, so thank you, Jessica. Even though I say this to people, it's hard for me to remember. I constantly drive myself to keep working, even though my body is yelling at me to stop, because I think there's some amount that I 'should' do today. I'm very grateful for your generosity in sharing this, because I know it's not easy. Yay, you!
Very much needed this video today.
As an autistic person, my executive functioning isn't exactly spectacular. I feel like it's been worse than usual lately, but who knows, definitely not great to begin with. Anyway, I've been unintentionally comparing myself to my peers quite a lot these last couple weeks, and I've just felt like I'm not doing well enough, not trying hard enough, that I should be able to do better. I do know that I'm doing my best, but that just doesn't feel like it's good enough. I brought this up during the autism support group I go to at my university, and we had a sort of similar conversation, about how well we've managed to do in our classes academically but how that doesn't portray how much of a struggle it is for us to get those grades. It was more about that than comparing ourselves to others, but that's also super important and probably something we should talk about.
Thank you YES, I am also autistic and I ALSO feel like it's been worse lately (my theory is that the pandemic in general has stressed is all to the point of exacerbating the negative stuff) and I have a really hard time not only comparing myself to my peers but comparing myself to MYSELF, five years ago. I think of what my routine was like give years back and go "why can't I do that anymore? What happened?"
@@WatashiMachineFullCycle Absolutely, I compare myself to my past self all the time. Like, "oh, I could do this last fall, why can't I now?" Or looking at how much I managed to write in middle school and high school. I think my executive functioning has worsened due to the stress I put myself under in university. It's just so frustrating and so hard not compare to others or your past self.
so glad she shared this. good reminder to me that no one is totally perfect all the time just because that's what they show the world. it reminded me a lot of What Is A Spoonie? // The Spoon Theory she did 5 years ago. and yes I still remembered it. 5 years later. it's that good. because when the world makes me feel like i'm literally trash. luckily she's here to tell us why we're not. and for that I will be eternally grateful.
Definitely needed this, especially today. hEDS,POTS, and fatigue, and now lingering covid from last week on top of that. Sent this to my zebra friends too!
Now go rest and go back to no talking, just signing!
Ouch..my chest hurt every time you coughed or breathed in after a cough.❤️ Every cold I have goes straight to my chest. You explained how it feels when coughing so well; shards of glass, check☑️🫤
Thinking of you. And although it feels like it never will go away…sometimes you really do need more than a month before you get better. It will end…just takes longer than others.
Ok so this is something I say to people all the time!! Just because I can do something one day doesn't mean I can the next..
I'm currently in therapy for complex OCD specifically for contamination. I did a experiment with 2 jars and some marbles. Ocd jar and I win jar! I put a marble in the ocd jar if I gave into a compulsive behaviour and my win jar if I didn't.
I do this daily and track it. It's now a very nice way to show people just how different my days can be. The exercise also benefits me as I can track my progress.
I have physical issues that effect me on the daily but I thought this was a realy good example that shows day to day struggles in a visual way.
Hope u feel better soon hun 💕
Sick in bed or dolled up to go, you are beautiful, inside and out. Sharing your vulnerability and low moments is painfully brave. And inspirational. Claudia is the best wife, ever. Love your videos!
My disabled self feels indescribably alone today. Thank you for this video. I love you and Claud so much. Get better soon Jess!
❤
Appreciate you sharing & keeping it real but please don't push yourself. Sending you healing thoughts
Thanks for such a chill video! I'm in bed today (more from pure exhaustion than anything) and your videos are always like meeting a friend for a quick, cozy chat. Hope your infection goes away soon!
Your videos are literally water in the desert for me. I have several chronic illnesses, and chronic pain from fibromyalgia. On top of finally partially coming out in my 30s, there is so much of your content that I relate to and am comforted by. You and Claudia are my ultimate couples goals! ❤️
Ohhhhhh little Tilly loves her momma!
My SI is very unstable causing severe pains and cramps. To get through the pain, I grab ahold of the well wishes my community send me. They warm my heart by keeping me company. Community is everything. Thank you for being part of my community.
16:06 yes be an everyday hero. i think Anne Frank used to say: "Even you have nothing to offer, you could still offer kindness."
Thank you so much, I love that quote! ❤️
Wishing you a speedy recovery! Thank you for making this video although you did not feel well!
I hate it when people say how well I am doing. What they don't see is the fact I haven't done the dishes or vaccuumed for a couple of weeks because all I do is what they see then go home and collapse. I have a virus and at the moment my goals are feeding the kids and washing dishes. I really miss lockdown. I had so much more energy. I so felt for you at about 15 minutes you really looked in pain.
I needed this thoughtfulness and insight today. Thank you Jessica and Claudia for sharing, you are a bright spot in my day, even at your worst!
I had a really bad day yesterday. Some random person gave me a compliment on what I was wearing. One sentence in passing. It was the best thing of that day. They have probably forgotten that already and they probably thought I was feeling really put together which I wasn't. So both: They saw one of the best parts of me that day and they made the best part of it, too. And we never realise it's that easy to be seen as better than we are and to make someone feel much better without doing much at all.
Feel better Jessica! I’ve been sick with a cold, myself but I’m getting better. Unfortunately I do still have a cough😞
As a person with garbage, asthmatic lungs who is dealing with post covid inflammation, I feel you. Good lung days are worlds away from bad. I hope that stupid infection goes away soon.
Thank you so much for this video- I *really* needed to hear what you said.
I had a chest wall resection to remove sarcoma & osteomyelitis on 8 December 2021 (after, at that point in time, 7 months of constant bone agony/near complete loss of function & a year of issues) & had my right collarbone, right 1st rib, right sternoclavicular joint & a large chunk of the manubrium, all the involved muscle & connective tissues, & the involved lymph nodes along the right side of my neck all removed, & then the muscle from lower on my chest wall rotated up & stretched to cover the whole area. Post-op, I had a deep drain that came out of my chest right between my breasts for just shy of a month, & my right arm was immobilized for a month. I also had a PICC line in my left arm & did IV antibiotic infusions at home for 8 weeks.
When I finally got my diagnosis in October 2021, I had been dealing with the worst & most debilitating deep bone pain in my chest/right shoulder/back/neck/jaw for more than 8 months (in addition to the sarcoma tumor, it was discovered during the resection that I had MRSA osteomyelitis all around the tumor & both tumor & infection had been destroying the bones & bone marrow for all of that time..) & bc the shoulder MRI I had in July 2021- when my family had finally forced me to go get seen bc due to severe fear/anxiety/distrust, i developed the phobia after my mother’s death in February 2016 & I had not been to the dr since..) had shown nothing but the mildest tendinitis & I had been treated like I was just drug seeking (but I finally was seen by drs at the start of October 2021 who actually looked at the giant mass on my right upper chest & the enlarged lymph nodes that had been there since before I was seen in the summer & freaked out, ordered a CT & blood work, & all that ended up with my diagnosis within that month), so I had pushed myself to just live with it.. so by the time I had the resection, I was physically & mentally exhausted from the pain & the fact that my body was actively destroying itself.
But I convinced myself/allowed myself to be convinced that after the surgery & when it came back that I wouldn’t also need radiation, that I should be right as rain. I pushed myself to be “healed” and to be back to “fully functional” as quickly as possible post-op, and “put on a positive/happy face”. I was determined that I would be all better.
And even though I wasn’t, I turned down PT because I had already pushed myself into using my right arm/shoulder/collarbone, etc, & I wasn’t going to admit any weakness.
Because I was the lucky one, right? All it had taken to “cure” me was the one surgery & even tho I had the 8 weeks of Iv antibiotics, it wasn’t like I had to have chemo/radiation & so I wasn’t sick anymore.
I bought into this whole toxic positivity crap that seems to go hand in hand with cancer diagnoses & hid the majority of my struggles over the last year because I wasn’t supposed to still be sick.
And while I did *look* good- I was so active & doing all of the things, etc etc etc- I wasn’t. I’m not.
I had a big portion of my upper chest/collarbone cut out less than a year ago due to sarcoma & massive infection, & my immune system has been in the tank the whole time- I was recently diagnosed with Rocky Mountain spotted tick fever.
I may look good, but that doesn’t mean that 4 out of 7 days for the last 6 months have been really really bad days. I’m having more/additional/new issues similar to what I had before the resection in another area of my chest.
And It’s exhausting that I can’t stop myself from beating myself up mentally over it & struggling so much when people are constantly telling me how good I am looking & that I feel like I have to hide the fact that I’m not well/having these bad days…
❤
I like that Claudia hijacked the video. It sort of makes it two videos and honestly it’s every bit as supportive as everything else she seems to do. I’ve always been very impressed that she seems to lift the weight of ten people while taking care of so many others whom display the same level of capability intelligence and talent in the face of any challenge or task. They are astoundingly impressive people and they are a good example of taking pleasure in peoples successes. Whether it’s tiny or utterly monumental most of what they do is a triumph and it’s only one of many positive perspectives they offer. If there is one word that stands out the most to me it’s usually “impressed”. Yet people still feel bad about wanting some time to themselves even when they have stacks and stacks of trouble. It’s a weird feeling to have really high standards for yourself, but it’s certainly not just yourself that influences those standards. It can sometimes even be a response to the toxic sides of things Claudia is talking about and it is really important that we understand what each other might go through and try to be good to each other. Making the world a little less cruel can be alot easier than you think and you do deserve to know that if you’re trying you are more than good enough.
It is nice watching this while I fight a migraine and wait for my IV infusion. Hope your doing better and here is to appreciating both the good and bad days.
I've got Spina Bifida and Hydrocephalus and I've had people call me a liar or a bludger when I've discussed my bad days with others. They think because they don't see it, it doesn't happen. But really, they only haven't seen it because I simply can't leave my house (more specifically my bedroom or bathroom) on those days. If you are seeing me out somewhere, it's a good day.
I like the idea of nurturing ourselves to not be ladder kickers-- to be okay with someone having it better, we should not want people to have to deal with awful stuff, like student loans. And if we can't want that for purely kind reasons, we can pick the selfish/petty reasons like because they might help us in some way, or our children!
I'm having a rough week and this really spoke to me. I do compare myself to others of course (and so you sharing this is so kind, thank you) but the hardest thing I often experience is believing I will never be better, that my best days are in the past. I try to remember everything temporary and we don’t know that future. Also I loved it then Claudia hopped into bed with you and put her arm around you. We got to see you to just chatting and exchanging ideas. I’m grateful to have witnessed such a sweet moment. I hope you feel better soon.
Ive been newly battling chronic illness for a year now, which unfortunately means I had to give up my lovely caring job at a resthome and can barely work. Meanwhile watching all of my other friends begin to go to uni, get promotions, move out, etc, and seeing your video makes me feel so much better about how much I can and cannot do anymore. This just made me feel better about myself and I thank you for putting this out on the internet and also just becoming an extremely comforting channel to watch on good and bad days
Feel better soon, Jessica. I feel you. Mine is more struggling with keeping things together while caring for two children on my own. Missing a lot of activities. Just because it's too much sometimes.
❤
I have chronic migraines and wow I do feel this. Sometimes I have to take a day off from work because of the migraines and if it gets to be too many days in a row, or happens every few weeks, I start to feel so weak, because wow shouldn't I be able to /do/ things? I also try to always put on a good face, so you don't always know if I'm /actually/ not in pain. Creators like you are sooo so so so necessary, Jessica. Thank you.
This video made me feel SO much better. I have chronic pain, and I work as a nurse in a hospital. 12 hour shifts on my feet take it out of me. I love caring for others when they are not having their "good days," but I often compare myself to my coworkers who seem to do so much on their days off. I have been having a bad pain week and am on the couch on my day off with my heating pad feeling like I should be more productive. This video is what I needed to see today
15:20
Don't worry Jessica. I'm having a pretty bad flare up right now and this video has definitely made me feel better :)
This is so important for me today and I'm so glad your video came out when it did. I've been struggling with the addition of possibly another chronic condition on my list of chronic conditions and I feel absolutely horrible. But everyone online is up and doing, as are many of my favorite youtubers with chronic conditions. And I think to myself, but they're all getting up and around why can't I? I had to remind myself through your video it was okay for me to suddenly just not want to anything. To take a break and go nowhere. Or use my cane just because.
Preach Sister! You are singing the song of my life!
I started following you because i stumbled on your videos because i had been watching some videos on vintage clothes. I was diagnosed 2 years ago as being on the autistic spectrum but also last year i had a knee implant implanted and the recovery process was gruesome for me. I have also chronic depression and it was all too much for me. Your videos give me often great joy but also help me because you are so open about your disabilities and how they affect your life. But i also looooovvveee your look, the clothes you wear and that ypu dress like this because it gives you joy. I love therefore the videos like i saw earlier today, where you wore that blue dress with brown i think, the gloves and the straw hat. But also your upbeat personality. Thank you for all that! You indspire me often when i feel low.
I don’t believe I have ever commented on a video by anyone, but I think this video is better than fantastic. I think this message is something everyone needs to hear. Thank you so much for making this, and I hope you feel better so soon.
Thanks Jessica. I'm lying in bed as well trying to stay in the moment. I have ME (the disease nobody has heard of that you made a lovely video about a few weeks ago). I've been bedridden for 10 years, but on Monday I have an appointment at the Mayo clinic. It's good if I can get some help. However, I'm on the verge of a panic attack thinking about the long car trip, the hotel, the tests, and everything involved. Plus, my cynical brain is telling me it will be a waste of time because nothing I've tried in 22 years of being ill has helped. You made me feel less alone. ❤
Thank you for your realness. I suffer from fibro and I just had a difficult tooth pulled so the constant pain and fatigue are getting to me in a bad way.
I had to watch this in two parts because I'm struggling to do anything normal.
After watching your video I'm thinking less harshly of myself and trying to tell myself it's ok to take care of me.
Thank you again for the comfort you have given.
Thank you so much for showing the honest reality of being chronically ill. I have RA and run a design studio. Living in a small town, people only see me on my good days. They do not see me struggling or realize that seeing me up and well is a good day. The bad days are quiet, not talked about. The internet and you have bolstered me up to manage the bad days. Keeping up one's spirits whilst handling repeated bouts of ill health can be a challenge. Thanks for your honesty and constant inspiration. It has helped me many times when battling my confused immune system.
Dear Jessica, my heart goes out to you. I wish you a speedy recovery!
I'm also struggling with chronical illnesses and it feels so heartwarming to hear someone else, especially from a person I look up to, saying these words. We all have our bad and good days, and some of us have more of one of them. And it's so sad when people judge each other strictly by the days they see most.
Thank you so much for sharing! I have been struggling lately with some mystery health issues and it's good to remind myself that people mostly post on their good days, and to stop gaslighting MYSELF by judging myself by my good days.
Oh I didn't know Claudia got more tattoos! Very cool