My take on independence while being disabled is to snatch it where you can! So while I may not be able to dress myself, or go to uni for example, I can run my RUclips channel. I run a pen pal style PO Box. I can run my blog, and I can sew! Those are my things and I am relatively good at them! It’s important to do things that you can by yourself, otherwise I think I’d have lost my sense of being ‘me’ and I’d be really sad a lot of the time.
Well said! I completely agree. I know there have been times I’ve sort of questioned my identity because I wasn’t able to do the things I did before. It’s like your whole self concept totally shifts when you become chronically ill.
@@jessicaoutofthecloset Okay, I am years late to this video since I just found your channel. However, I have thoughts for you on driving while disabled. My mom has physical disabilities as well, though her's aren't as severe or debilitating as yours, or even mine. They just mean that after work she often is running out of grip strength and mental focus. The car she got has "lane assist" that can tell where the edges of the lane are and help keep you in them even around bends and curves in the road. It also has a sensor to help keep from running into people or things if things change faster than my mother can react. Add to these great things that it links with her phone and has voice commands and the car is more than capable of helping mom with making it home after a long day, or just a bad episode. We are talking about trading my car for one that has all that assistance as well because to me it would be worth a higher car note to have assistance to get myself to and from the doctor or shops on bad days when my hands don't like keeping a grip and my focus is trash. Especially since I live in America and can't afford a carer, and the government is happy to assist my family with putting me in a nursing home permanently but not with procuring a carer or the like. ... Something like this might help you as well if you decide you would like to have the ability to drive yourself since it would help you if you had the energy to go to the place and do the thing, but weren't sure you had the energy to make it home safely.
As someone with ADHD, Autism & Severe Anxiety that causes up to 3 panic attacks a week even on strong meds I would LOVE to be able to live alone. I’m 26. But I know that I will probably never be able to. That being said there are things I can do for myself and that is huge for me. I took public transport by myself for the first time yesterday and when I got to the stop where my Brother was waiting for me I burst into tears because I did something I was never able to do before. This is something “normal” people don’t seem to understand. Something that is a normal daily thing for them is a HUGE thing for me. In that moment I felt more independent than I had ever felt in my life. For people living with Disabilities it’s about the baby steps not the huge jumps.
Anna Pettit Mental illnesses can be just as debilitating if not more than some physical illnesses, and people with mental illnesses can identify with the disability community as they wish to.
I ship Fuffy SO HARD. Their fanfiction and fanvids pretty much pulled me through my four years of lonely bedrest! (top tip) ... I may have also written some of my own fanfics 😏
*Nearly spits tea on computer* Well in that case let me recommend my favorite podcast, done by my favorite lesbian couple (on U.S. side of the Atlantic) www.bufferingthevampireslayer.com/ Not only plenty of queer theory (their terminology) and fun times, but an original song about every episode.
Jessica, I️ feel like this is the prime example of interdependence. It bother me that a lot of people think that if you aren’t fully independent in all ways that you are dependent on others when in reality we are all interdependent with each other as human beings. We all need other people even if simply for social interaction. There is absolutely nothing wrong with interdependence it’s what makes the world function.
I love this perspective. Our society almost tries to make us feel like we should be unhappy if we're not fully 'independent' in the conventional term, like it's the ultimate goal. What about community and interdependence? And like you said, there are multiple varieties of independence as well.
this is so encouraging. I remember forcing myself to go places on my own just to be "independent" and then find myself there without the proper spoons and barely making it home again
I’m not physically disabled, but I struggle with clinical depression with makes me feel so sad and like I can’t do anything of worth. Hearing your experience puts everything in perspective and truly inspires me ❤️
I know that Jess was feeling aweful while filming, but she looked stunning. The hair, the sweater, the makeup, her, the sick bucket off screen... Just. Stunning.
Ohhh I’m 31 and I day dream about driving! How glorious it must be to just want or need something, and not make a huge production about it! #thanksbody
I have hearing impairment ,arthritis and an auto immune disease. The internet and my channel were life savers when i had to wind down my consulting . although i could still write my books i felt the lack of communication and contact. my channel has been so much fun and helps me feel like i am still helping people. my husband is disabled too. we rarely go out without one another so the term 'independence' has rather taken on a new meaning. it is anything we can do together without help of family or friends. and that is just fine. I know i am a lot older than you but finding your channel has been lovely. xx many blessings from Scotland xx
I've just discovered your channel, and I'm absolutely hooked. I know I'm late to the party, but congratulations on getting married! Also (from your "why I don't sound deaf" video, YES YOU DID SO GOOD ON THAT IRISH ACCENT 10/10. I'm a derp and forget to comment on videos when I have a thought, but I really am loving your channel. I understand the struggles of "building a ladder" every day (as I put it.) when dealing with a disability, or in my case chronic pain, and listening to some of your struggles and how you cope with them helps give people like me the strength to always build that ladder, even if each ring gets a little bit harder to construct. Sometimes it's so hard to get out of bed, to do that work out, to walk to work, to shower, even to eat. Knowing that there are so many other people out there that have the strength to keep going even when they physically feel like they can't, pushes me to keep moving forward, too. My therapist once told me "If you aren't living every day with the goal of working towards your better self, what are you really doing?" Which then cause me to develop a really annoying phrase in my every day speech, which is "live your best life" and while that phrase is used by many people and it has a lot of different meanings. For me it reminds me to always work towards my better self, and if I'm unhappy I'm probably not doing something right. Thank you for sharing your life with this messy world of RUclips, because you give people like me strength to keep going!
This is a pretty relatable video for me. I have lived alone for nearly 4 years and I have barely left the house in that time. This year I decided to learn to drive. I started a few weeks ago and I am going to get a mobility car. Independence is objective to the individual. Going to Asda by myself is going to be a monumental feat and I can’t wait for it. Wish me luck that I actually pass my test soon
Jessica, as someone who is severely depressed I can tell you driving is the best thing. When I do some errands the best part is being able to rush home with my car spend like 5% of the energy I’d use to get out and walk. Not much safe but still comforting!
feeling like you're going to vomit from your eyeballs is the best description of the feeling of migraine ever. So. Bad. I think independence is really mostly being able to make decisions for yourself and also, as you said, making these great videos online, yay! Totally agree with you. :)
As a person with CFS, malformed joints in my legs, IBS and have just learned that I will go deaf in at least one of my ears slowly over the next few years this channel is exactly what I need
Wow, Jessica, I so appreciate your honesty! I am disabled myself and you expressed with such clarity what it is like to accept the limits of "independence"! Thank you for sharing your positive outlook on life! Sending love from Oregon, USA!
Your independence is enhanced by having Clara or your wife. I have a similar circumstance in ways. I have a caregiver 4 days a week and my wife is a caregiver at times also. She is now quite sick so it's hard to be as free to move around as it was but I've worked out other ways and means. Having support allows you more freedom. I am the same. I soooo relate.
You're wearing a sweater my mother owns from the 1950s. It sits in her bottom drawer of her chest, along with other favorite pieces from her youth she hoped a daughter would wear. She was TINY, and I could never wear them! It makes me incredibly happy to see you wearing it.
The things about independence is YOU get to define what it means to YOU! So of course I agree! As an Occupational Therapist in the US we talk a lot about independence too, but ultimately each person gets to define what it means for themselves.
100% agree with this! Can be so frustrating sometimes when you want to run an errand or something but have to rely on someone else! But it just shows how strong we really are by the way we deal with everyday struggles! Hope you're doing well xxx
Watching your videos is really helping me feel better about my depression and how that ends up affecting my life. I know it's not anything like what you deal with but there is a bit of overlap and your videos have been helpful to me.
This made me feel so much better about things. I've been having a lot of trouble facing the increasing difficulties and restrictions that come with aging and my conditions, the need to be accompanied everywhere (even just for groceries! Ugh, it's just down the road!!) And all the damage that came from before I was treated, and reconciling that with the idea of "independence" people keep pushing at me. Thinking about it in the terms of making decisions and creating the things I want to... That makes it easier. Thank you
seeing your videos has become a big source of strength for me, and i think this one resonates with me the most. im a disabled teenager living with a family who are not only all able-bodied, but who are also all in denial that im even disabled to begin with. it makes such a huge difference to see someone who understands where i am in my life and shows me that i can move forward.
Hi Jessica! I am a new subscriber and i just wanted you to know that your videos have really helped me navigate around my autoimmune condition and managing every day life involving college, work, and my illness. You are truly amazing and I️ am grateful to have found your channel! Thank you so much for being an inspiration.
As a 40 yrs old woman. Living with ME/CFS POTs too. It is hard to dependent on others. On my best day I could drive somewhere but not come back from there. Loosing a lot of IQ too. I can’t even do homework with my boys. You video touched me. Made me feel less alone. Thank you very much. I hope you are staying safe from the COVID. Continue your great work.
Thank you for this video! I'm in the middle of reducing my "independence," like getting help with shopping and stopping driving. These decisions allow me to work about half time, something I was struggling with when I was trying to do everything myself. People around me keep expressing sadness on my behalf that I'm "giving up my independence." I feel like I'm gaining independence by earning my own money! You've helped me feel better about my transition to less (more) independence. Thanks again!!
I've been disabled since I was born and the major part of it is that I have to use a wheelchair. I'm in my senior year of college and I still have to live with my parents, so it can be kinda frustrating sometimes when I see my friends live in their own apartments and such. I also can't drive a car and have to have people drive me, but it can't be just any car. It has to be able to carry my chair. That's the most frustrating because I can't just go wherever, whenever. But it's nice to know that there are other adults with the same problems. My big issue right now is that chair's battery is acting up and I can't go to class unless I want to be stranded on campus.
New to this channel and I’m impressed. If you’ve never experienced chronic illness and/or pain, then to watch this content offers some desperately needed education on what that is like. You do it with humor, grace, and irrepressible charm. Also, you have a wife, a home, and a platform that you use to educate and inspire. If that’s not independence/control over your own destiny, then I don’t know what is! Cheers!
My health is in a bit of a downward spiral at the moment and I've been struggling a lot, but watching your videos the past few days has been so lovely. Your approach to your disabilities is so refreshing and your relationship with your wife is so adorable! I totally agree with what you were saying about your wheelchair - I can go so many more places and do so many more things using my mobility scooter than I could walking. And I actually have energy to do things at my destination, rather than wasting it all on the journey and worrying about getting back! Having online delivery for *everything* and a support network of friends who will happily help me with the washing up when the pile is teetering is what allows me to live in my own place and be independent that way. I think independence is very subjective; there's no one way to be 'a grown up' that when you hit that one specific milestone someone hands you a certificate of proof, after all
Super strong independent married woman, you are amazing, I am able bodied and love it when my wife helps out around the house, there is a lot of goodness in being interdependent. That how it is for me, I look after my wife and she looks after me. I think you and Claudia live in a similar space.
Oh God I know this feel about "omg, it would be amazing to just drive somewhere and have the thing!" I can drive but don't have access to a car, and with my energy issues doing something like going to pick up loo roll or whatever is An Event. When I've seen friends just... go places, and it's no big deal, I'm like "whoaaaa."
I have just discovered you I suffer from fibro, CFS, P.O.T.S. ehlers-danlos syndrome, Ankylosing spondylitis, cerval spondylosis, depression, anxioty, severe eye issues, arthritis in EVERY joint in my body. I don't know why I decided to watch because I have gotten so frustrated with doctors. There is so much I want to say, but will try to keep it short. I personally feel all my maladies are a result of abusive childhood. My father was (and is) a very brilliant man. I was extremely she all my other sibling were very outgoing. All my life my mother would tell me to stop being so negative, there is nothing wrong. One doctor told me at thirteen that I would be in a wheel chair by the time I was thirty. Within the last seven years I have had six major surgeries, three back surgeries ( one of which they did not expect me to recover from), three knee replacements. Due to my EDS the knee replacement left me crippled and breast cancer and several minor procedures. I knew all the minor procedures were not going to work because I have had all of them before and they never worked , but each time the doctor acts like they are God and they can help. I personally would enjoy hearing what works for you, even if it is medicine. I am on a crap load of medicine as it is. I do exercise four hours a night hoping to get some kind of function back in my knees. I have gone through so many therapist (them quitting on me). I had a therapist I told her that I was unable to get of be. That there are days that I am in bed over twenty four hours. The response I got from the therapist is maybe that is what your body needs. This really, really, made me mad because there has been so much written lately about the dangers of sleeping to much. I read that sleeping or being bed too long is equal to smoking three packs of cigerates a day. I then told her that my social circle is zero and once again nothing from her. I don't know about in the UK but here in the states there has been all kinds of writing about the dangers of both loneliness and being alone. My therapist offered nothing. The final straw was when she said I am where God wants me. I said God does not create anyone to be unhappy. My experience is that most therapist are like this one, they really don't have a clue and all they want to say is little niceties. I think she just liked talking with me because I am a lesbian as was she. I could not relate to much of what she was saying because I was much older then she and the whole gay scene was so different and under ground. I know diet at least for me makes a huge difference, but when you are feeling crappy fixing something healthy is not in the cards. I am on two new meds. for P.O.T.S and they have made a huge difference in exorbitant sweating I do and my heart racing from the smallest tasks. Headaches are a constant. I am not good at over doing it when I feel semi ok because there is always the fear that tomorrow will be worse. One final item, Is I don not find the depression and anxiety blogs any help. It seems that for most their depression and anxiety is a new thing and their sympoms are so minimal compared to mine that I just want to shake them. I to do not drive and regret it everyday. Sorry for taking up so much of your time
Thank you so much for your videos. I have chronic pain, I have stage 4 endometriosis and adenomyosis, it causes a whole bunch of symptoms and I struggle to deal with it because people treat me as defective sometimes. So watching these has helped me so much. I hate when people tell me "I hope you get better". Today is a tough day, the light is hurting my eyes, I have a terrible migraine and I feel nauseous but watching these raises my spirits, thank you so much. You're such an inspiration. Love from Cape Town, South Africa
Hey Jessica. i find things like Amazon and online shopping to be so amazing in terms of helping me be more independent. There are days where my legs are too sore or my eyesight is too blurry to do things by myself and in the days I feel well enough physically it can be a struggle mentally, I have a hard time with crowds so I'll avoid shopping at all costs. Independence for me is being able to do the things I want to do by myself, however small. I don't like to rely on people for help and I'm glad that a lot of the time i don't need to.
As a recent (2021) subscriber, this video is a source of serious comfort for me living with disability without the "official" disability title in America (social security disability/partial or full) or some other like institutional validation. But I still am! My disabilities make it really hard to get myself adequate treatment as well as adequate medical records which would allow to me again than American government validation- which is also a powerful social currency for Americans with disabilities, where ableistic ideologies are entirely the norm.
When I was a teenager, I definitely related to this. From when I was 6 weeks till I was 16 years old, I had a breathing tube; and the whole independence didn't the textbook definition. I could do everything myself but I still needed a nurse to take care of any phlegm that needed to be cleared out. Everyone's independence is different, especially when disabilities and chronic illness is a part of their life. Also, thank you for having a pain day video.
I'm disabled too and my independence is just in doing the little I can do and you inspired me to be open on m chronic.illness journey thanks so much Jessica for your videos! Also I hope you don't mind I mention you in my videos and I put your videos in descriptions so other people can benefit from them to.
I totally agree! Independence is getting to live your life on your own terms, and doing what makes you feel most affirmed as a person. Also, GREAT Buffy reference
Independence of mind is strength. You are so strong willed and an inspiration to even non disabled people. You dont let your body stop you from trying to accomplish more. Im so proud that we have a positive empowering voice such as yours to brighten the internet. Much love! Also, unrelated, your style is my aesthetic. So beautiful!
My boyfriend works in disability here in Australia, during a roll out of the national disability insurance scheme. He has taught me a lot about disability and I now know that independence means doing as much as you can and not having a paternalistic influence ruling over you telling you that disabled people can't decide anything for themselves. You are having people around so you can do what you can, but they don't dictate your life. You seem to have such a great support system :)
Big love for this video. I'm in a bit of a weird place at the moment where at 25 I'm less independent than as a teenager and the realisation that that probably isn't magically going to change. However, the internet is indeed a wonderful thing and the ability to online shop, communicate, study largely without having to leave my bed is great. It means I can use my energy for actual fun going out things! 100% agree on the 'don't call an ambulance' thing! A&E is indeed hell on earth. I now have a 'hospital passport' which I keep in my bag that runs through all my medical conditions, consultants, meds etc. Which makes them way happier to a) communicate via writing rather than attempting to understand them whilst concust/ on drugs! b) happy to let me go asap and trust I know what I'm doing and c) stops me having to repeat all the medical info 50,000 times. A* highly recommend (usually used for learning disabilities but totally adaptable for any condition, UCLH have the best template). Also love your jumper x
Ah. I had never thought of independence in this way. Thinking of it in this way makes me feel happier. I think of crutches and things as a big bother! But if I think of them as helping me move better it is comforting
omg than you so much for the content warning! I was already kind of expecting it because I know you mention it quite often in your videos but as a person who has quite bad anxiety and panic disorders that are rooted in a crippling fear of vomiting, it is really nice to see a warning on a video so I can brace myself and not be caught off guard. thank you so much for that nice little gesture!
A toddler slug!! :-) That is a much kinder and happier description than my 'going at the speed of a drunk centanarian'! Thank you for these videos. They really help!
I know it's an older video, but I find that autonomy is much more important to me as a disabled person than independence. When I can have some say (as much as my body and capitalism and pandemics and wildfires let me) in what I'm doing, I feel centered and calm in myself, whether I need someone else with me to help me walk or get my meds or I'm doing those things entirely on my own. Being able to decide where I'm going matters more than whether I'm getting there alone. Thus, autonomy.
Oh Jessica, you always seem to know what I need to hear! Having invisible illnesses and therefore "passing" as able-bodied has 100% skewed my perception, and expectations of my own independence. Thank you for pointing out that because we are different, our independence is necessarily different too.
I LOVE THIS VIDEO!!! Growing up with numerous mental disorders/disabilities (autism, adhd, multiple mental illnesses), "independent living" was a huge thing that was focused on with my treatments. However, my parents, case workers, and doctors were so incredibly focused on getting me to what THEY felt would help make me reach independence in adulthood (I was a child-teenager for most of this. I'm 27 now.). Using the driving example that you did, I never wanted to drive but in the States (where I live), driving is the primary transportation people use. With my ADHD causing attention difficulties, my Autism causing navigational difficulties, and my mental illnesses that cause panic attacks, dissociation and paranoia (among other things), I didn't feel safe driving; I've expressed that the idea of it terrified me from age 8 or so until today. But when I was 17 and wanted to learn public transportation routes and proper usage/alternate forms of getting around, I had to get my license no matter what I said/how I felt about it because, "you'll be more independent with a car." Well, I have my license and a car, living out of my parents house too (yay for that though. ^_^), I feel far more isolated and dependent than when I was in college with no car on campus, using buses, trains, and walking. With my Autism too (speaking only on how my autism acts), if I just start using the buses in a place I've driven in primarily previously it will leave me extremely confused with my daily tasks and how to approach them. I like to describe my Autism as if/then statements in computer programming - change a variable (the car in this case), my processing of how to respond to, react to, and complete a given task will essentially shut down entirely. Things like that, and an entire range of how disabled people of varying types in connection with independence, is why I LOVE that you spoke about this. Independence is simply doing what you have to do to function in society. Do you need another willing person there to help, like this lovely youtuber? Still counts as independent. Do you need to do things more slowly than the average? That's fine. Do things atypically? Also fine. Etc.... As long as you're trying and doing what needs to be done, then you may have reach "INDEPENDENT" status. Even if you can't reach you're personal independence ideals, or your families independence ideals, just try to be a good person and have some fun. Try to just make the best of a difficult situation. Easier said than done sometimes, but where's the harm in at least trying? ^_^
I am processing the fact that I am going to need around the clock care as I have covid and just can't keep up with things and have tried to make it on RUclips but it hasn't really happened for me and I am looking for a way to make some pocket money.
Seen you on my recommended feed, and honestly I'm really happy I did. I do not have a physical disability per say, but I have severe panic disorder/anxiety. It really controls my life but watching someone like you who has overcome so much really motivates me to keep my head up. Days now just mold into eachother, I can't work...though I'm trying and pretty much inside all the time. Thanks for sharing your life.
I relate so much! I have Ehlers Danlos Syndrome (hypermobility /frequent dislocations), POTS, Narcolepsy with cataplexy (literally any time I am startled, pain spikes, POTS kicks in or high emotion or lack of sleep TRIGGERS IMMEDIATE DROP ATTACKS OF PARALYSIS) ...long story short, I cannot be alone either. You are wonderful. I love your videos. I love your charm. You've got me inspired to start my own RUclips because you have changed my recent life, and keep me sane knowing I'm not alone in the medical calamity life. -Katlyn Katastrophe
What are the odds that the same day I subscribe is the day a new video is posted?? Fantastic video by the way, you have really opened my eyes to the reality of living with disabilities.
I completely agree! So grateful to be able to connect with internet friends and run my RUclips channel. Also, being able to order groceries and anything else I need online is incredible. Gold star for whoever thought of online grocery shopping ⭐️
Jessica Kellgren-Fozard a tip to not forget to take your meds after the alarm goes off is to either not shut off the alarm until you’ve actually taken the pills (which can be rather irritating) or hit snooze & then after you’ve taken the pills turn off the alarm. I love watching your videos!
Jessica Kellgren-Fozard Every fall they sell baked whole sweet potato here in northern China. One of the 549 reasons of why I love fall. So sweet and creamy like melted honey
You are truly inspiring. I suffer from Chronic Fatigue Syndrome as well, and your videos are so amazing and real while also being inspiring and hilariously entertaining. Thank you 💛
I just want to say that watching your videos makes me feel like I’m not alone. I don’t have all of your disabilities, but I do have PoTS. Just knowing that someone understands what it’s like to have a limited about of energy or “spoons”, and that someone knows how hard it can be just to stand up for a while. You give me hope because you don’t let it bring you down and you keep going on. You are a real inspiration. Today was a low day for me, just getting up and walking around the house is hard. But on better days I can get out and walk around for a while. I am also lucky enough to have a beautiful woman in my life who loves and cares for me, just like you do. Keep doing what you do, again, you are such an inspiration.
You saying you feel more independent in a wheelchair than on foot really resonated with me. I have a learning disorder and process information differently. I find that when I go shopping, I feel most aware and capable when I have a friend with me, double checking lists with me and making sure I don't lock my keys in my car. It's become such a point of anxiety for me that it makes domestic tasks aversive to me. Your video's helped me articulate that capability and success have become more important to me as an adult than independence. It only makes it more fun that I have someone there to share those successes with! Especially when there's really great people in one's life. I also feel like family structure is a bit different now than it used to be. Western culture strives on this sense of independence. It would be neat to see that change in some ways.
I'm watching this on day 2 of a fibro flare, and a migraine. Laying in bed, and yes. To everything. My family doesn't understand yet that I cannot be home alone, that I have to be reminded for meds and food or things get bad. And even with the pain I'm currently in, I can hear you, and respond. It's an important freedom.
Jessica... THANK YOU... i have recently found your channel (you video about dating someone with a disability popped up one day, and my partner is deaf so I was curious and instantly fell in love with you and your wife) but then when i found your vlogs discussing your other disabilities to some extent i felt so connected to what you were saying. Ive fought illnesses my entire life but recently have been struggling with a proper diagnosis and when you talk about how it feels your body is constantly telling you something is wrong, but it doesnt know what... I GET IT! and the chronic fatigue sounds very familiar as well.. but i have never connected to anything more than your comments here about fainting in public and not wanting people to call the ambulance (even though theyve got the good stuff) it being the hospital (US here) that is hell on earth ... i cried i was laughing so hard because I GET IT!! the number of times ive passed out in public and woken up in the ambulance just to say "oh crap!" Thank you for your vlogs... during a time where i feel like everyone thinks im lying or crazy (except my partner.. she sees its real) ... you make me feel less alone and less crazy!!
You do so well though Jessica. I'm a perfectly abled person, and you've achieved things I thought would be too much for me to do! You're an inspiration, not only to disabled people but to abled people as well. That says a lot. You're wonderful!
Hi Jessica, I have just found your vids and I am loving them, and not just because I’m a huge fan of vintage chic or the fact that you wear it so well. I work as student support with a group of adults with cognitive and intellectual disabilities who are learning those independence skills. While I would hate to speak for them, I know that quite a few at least do agree with you. It is amazing how adding a person can create independence. So many with disabilities rely of family to assist with everything, which particularly for those with intellectual disabilities really reinforces to those they encounter and often to both the individual and their families the idea of perpetual childhood, which is awful. One person I work with went grocery shopping with their support worker for the first time, they were so excited that they got to plan their own meals and decide on chicken soup instead of beef and barley and pumpkin instead of potato and that they could get a pack of their favourite biscuits. For them until that point, mum had done the shopping and mum decided what they got. Having support gave that person a freedom and independence they had never had before and it gave them a new sense of self they hadn’t had before. It was awesome and it’s why I do what I do.
Recently found your channel and you're really helping to open my eyes about these things. My mum has fibromyalgia so understanding chronic illness a bit more really helps me. Thank you for making your videos
I haven't thought about how the definition of independence changes with age and ability in a long time. Man, I remember not being able to drive, and when my medications made me so foggy I couldn't even walk anywhere. The way it changes is fascinating to think about
I'm some what amazed that someone implied you werent independent, one of the things I noticed and thought when I started to watch your videos was that you were able to be very independent (I do not mean that in a condescending way, I am disabled myself and Im just seeing it through the eyes of someone with no independence). You may need help from people due to your disabilities but that doesnt mean youre not independent. I think what you do is amazing and you have a really great outlook on life. And it's so frustrating when people talk as if you will 'get better' within a time frame and then 'everything will be alright', I know they want to say something positive or encouraging but it's really not a nice thing to hear when you know you can't 'get better', thats not how it works. And I totally get how you feel when you say, it would be wonderful to just be able to go outside, go to the shop and get the thing you need, and then go home, all by yourself. That sounds like a fantasy.
I think independence is having the knowledge that you can choose what you want/don't want, or what you want to do with yourself. You don't necessarily have to have the ability to do it yourself, but people are not all alone! Independence is definitely a state of mind.
i feel like being “independent” is the most amazing yet scary thing out there, like yesterday at 5am i decided to go get some breakfast and waited outside for 2 hours just to go buy an energy drink and a lollipop from the grocery store, it was honestly sooo amazing but now after being bedridden for a beautiful 26 hours from pure exhaustion i see that independence brings a lot of bad things as well, i can’t even imagine my life without some sort of help with things like food, medications, pain management and mental health problems
I agree wholeheartedly. We all have limitations. Some not so obvious. You lead an example of effort and optimism above average! I believe seeing the advantage of having someone's help means your self esteem/identity is independent from outside influence. Lots of people can't accept needing help, because they think it has something negative to do with their identity. Yet, our worth is not synonymous with solitary achievement.
I agree with your definition of independence. I don't think any person can do everything they want, and you do an excellent job of being the best YOU ! And you share and work to help everyone. You are successful in your career, personal life, Marriage and Motherhood. Some limitations can have a "work around" and alternatives. I think you are doing very well and it's plain to see. Well done !!
I absolutely understand my illnesses are chronic and progressive also. Hugs also I understand I can't drive either. If no one is here I'm stuck to bad. I totally get you I mean I too my mental thoughts sometimes are I want to get up take a shower, clean the floors and go to the store go shopping. " Reality" Get up lay on couch, grab ice pack, heating pad and drink. Watch RUclips. Try to not feel sorry for myself! Geez I've edited this like 4x but I swear our lives are similar. You made me laugh and cry! Finally feel like someone truly truly gets it. Ty so so much! BTY I just love you guys your amazing beautiful and lovely.
This video helped me understand something other than what you pointed out. It made me realize that I've been so worried about my future independence because right now I live with my family and they AREN'T DEPENDABLE. By the point that whatever mysterious illness I have might get severe enough that I can't leave the house and do things there's hope that I'll be living with people I can trust. Maybe it wouldn't be so bad to be dependant if by the time it happens I have the same kind of people in my life that you do.
I once called you Wonder Woman, I stand by that ! You are a lovely person ! I wish that all your days are good ! I feel you and Claudia are blessed to have each other . We get so much strength from your videos but also so much joy 😊😊😊😊😊😊😊😊😊😊
I love this. I found your channel only recently and have been watching a bunch of your videos, and you are truly inspiring. As a fellow spoonie living with chronic illnesses, I think this video is so spot on. I will have to show it to my friends, because people frequently question how well I'll be able to lead my life being so sick, and I think you're totally right that chronically ill people just have to define independence differently. I'm a filmmaker, and I find independence in writing and creating stories. When I can work, it's exciting, but sometimes I can't. I spend large amounts of my day exhausted, watching Netflix, and playing bubble spinner online because my brain is too tired to think of anything, but I'm becoming more and more okay with that. I'm starting to accept my own limits because I don't see the utility in fighting them anymore. I wish I were brave enough to start a youtube channel; it seems there is great community to be had here. But I am so glad that your channel exists! Thank you!
Thanks for tagging the mention of vomit. I'm a recovering emetophobic so if I was having a bad day, I would have seen the warning and clicked away successfully avoiding a panic attack. Thankfully I was having a good day and could watch and enjoy the video. Thanks!
I just found this channel several days ago, while in the midst of a horrible fibromyalgia flare, and I can't express the enjoyment I have experienced with most every video I've watched so far! You speak so truthfully about living with disabilities, especially about us "not looking disabled enough" (whatever-sure, I love being disabled so much I'll gladly share it with you-said no one EVER)! I LOVE your retro style and you wear it as gracefully as any of the lovelies from that time. My mother-in-law was about your age at the end of WWII, and with my husband being an only child, she passed on to me pairs of the daintiest of gloves in many colors. Although I live in the U.S., if you would enjoy the gloves, I would be honored to send them to you. She would be tickled to know that someone as yourself would wear and cherish the gloves. If you'll reply to me, we can work out how to get them to you. I love watching Claudia and you together in the videos. Y'all make me laugh (HINT: I'm a true southern belle, so expect lots of y'all's in my messages) and actually help me forget, just for awhile, of how terrible I feel. After binge watching your videos, I've decided that if y'all (there is that word again) want an "adopted mum" in the U.S. I'll gladly volunteer!! Just too dang cute!
I do agree. I'm independently sitting in the bed watching you at 6am because I can't sleep. It's what I want to do, when I want to do it and I adore it! I can't get in a car and drive to get what I want either, but I can order things online and have it delivered to the house! Everyone has a different idea of what being independent means to them and that's perfectly fine! Really hope your migraine got better, Hun!!
I love your videos and personality you are amazing! I'm going to add subtitles into my videos, my step mam is deaf and tbh I never really thought of adding them in but she can't currently watch my videos because of this which I don't like. Anyway how did you do it? Do you babe to physically write out everything you say in the videos?thanks for your help
thank you so much for your videos. it means so much to me to be able to watch these. i think being able to see independence in a new way can also help me because it's so easy to want to define that word the same way as i did when i wasn't disabled, or thought i wasn't. but doing so is actually more disappointing.
Excellent video! I work for the government in my country In a department where 90% of people I come in to contact with have at least one disability. We focus on independence which can be an odd thought for older people especially carers or parents of someone with a disability because their idea of independence is so fixed. "Well johnny is never going to have independence because he lives in a group home and needs one on one support" kind of thing but we try to frame it as independence being this spectrum and for some people it is living alone with no supports and for others it's being able to choose what you get to do for the day or being able to be involved in prepping dinner while living in a supported environment with round the clock care and one on one assistance.
Independence is very individual for sure. I feel like independence for my students means that they have agency in their own lives. They might not be able to drive or have a 9 to 5 job, but that doesn't mean that they can't be happy, fall in love, have lovely pets, find a job they actually like, or take up a hobby. They deserve choices just like anyone else
Thank you. I love your honesty while mixed with your witty sense of humour. Having a chronic illness is so hard for some people to understand, but you explain it so perfectly. We have to take on things day to day, and meet ourselves where we are at that day.
Sometimes I look at the videos RUclips recommends to me and I'm like "why tf would I want to watch that?" Other times, I find a hidden gem that I then spend hours watching. That... sounded more creative in my head, haha. Anyway, I'm so happy I found your channel! You and Claudia are a joy to watch and I plan to spend the next few days watching all your videos. (Also, you may or may not have made me want to binge-watch Buffy again.)
You are very charming and quite funny! I'm really enjoying your channel, I think you are a raw, uncommercialized, RUclips personality and this site needs more unique people like yourself.
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"I feel like I'm going to vomit through my eyeballs." That is the absolute BEST description of a migraine!!!
I know right? I'm in that non constant pain kinda migraine place right now trying to sleep. Ouch 😢😪
The kind that is more cognitive and sensory than cranial pain(If I felt no pain whatsoever I would swear I was dead...)
My take on independence while being disabled is to snatch it where you can! So while I may not be able to dress myself, or go to uni for example, I can run my RUclips channel. I run a pen pal style PO Box. I can run my blog, and I can sew! Those are my things and I am relatively good at them! It’s important to do things that you can by yourself, otherwise I think I’d have lost my sense of being ‘me’ and I’d be really sad a lot of the time.
Yes! You've perfectly got what I'm going for 💖
So much! You gotta grab it while you can! The internet has made life so much easier for me personally too!
Well said! I completely agree. I know there have been times I’ve sort of questioned my identity because I wasn’t able to do the things I did before. It’s like your whole self concept totally shifts when you become chronically ill.
@@jessicaoutofthecloset Okay, I am years late to this video since I just found your channel. However, I have thoughts for you on driving while disabled. My mom has physical disabilities as well, though her's aren't as severe or debilitating as yours, or even mine. They just mean that after work she often is running out of grip strength and mental focus. The car she got has "lane assist" that can tell where the edges of the lane are and help keep you in them even around bends and curves in the road. It also has a sensor to help keep from running into people or things if things change faster than my mother can react. Add to these great things that it links with her phone and has voice commands and the car is more than capable of helping mom with making it home after a long day, or just a bad episode.
We are talking about trading my car for one that has all that assistance as well because to me it would be worth a higher car note to have assistance to get myself to and from the doctor or shops on bad days when my hands don't like keeping a grip and my focus is trash. Especially since I live in America and can't afford a carer, and the government is happy to assist my family with putting me in a nursing home permanently but not with procuring a carer or the like.
... Something like this might help you as well if you decide you would like to have the ability to drive yourself since it would help you if you had the energy to go to the place and do the thing, but weren't sure you had the energy to make it home safely.
just sit in a room and work out their differences, and by sit in a room i clearly mean _get it on_
isn't that always the answer???
aaaaaalways 😉
I literally saw your comment the moment jess started
Kristín Lilja I screamed when she said that!!! Honestly it is just criminal that the tension between Buffy and Faith was left, erm. unresolved 😂
lol I wasn't the only one that saw that 😉
As someone with ADHD, Autism & Severe Anxiety that causes up to 3 panic attacks a week even on strong meds I would LOVE to be able to live alone. I’m 26. But I know that I will probably never be able to. That being said there are things I can do for myself and that is huge for me. I took public transport by myself for the first time yesterday and when I got to the stop where my Brother was waiting for me I burst into tears because I did something I was never able to do before. This is something “normal” people don’t seem to understand. Something that is a normal daily thing for them is a HUGE thing for me. In that moment I felt more independent than I had ever felt in my life. For people living with Disabilities it’s about the baby steps not the huge jumps.
Congratulations for taking public transport alone! Well done
It's hard but I am also happy for you because your disability is 100% curable
hydrangeas well, I wouldn't t say curable. Mental illnesses can be lifetime things and incurable, but they definitely are manageable
Anna Pettit Mental illnesses can be just as debilitating if not more than some physical illnesses, and people with mental illnesses can identify with the disability community as they wish to.
Well I know I am a bit late but: Congratulations you are awesome!!!
New Jessica video...and she reveals she watches BTVS...and she ships Buffy and Faith...and all in the first 30 seconds. Holy Crap.
I ship Fuffy SO HARD. Their fanfiction and fanvids pretty much pulled me through my four years of lonely bedrest! (top tip)
... I may have also written some of my own fanfics 😏
*Nearly spits tea on computer* Well in that case let me recommend my favorite podcast, done by my favorite lesbian couple (on U.S. side of the Atlantic) www.bufferingthevampireslayer.com/ Not only plenty of queer theory (their terminology) and fun times, but an original song about every episode.
Oh. My. God. I'm off to investigate this... 😍
Jesse Turner This exchange give me hope for the world.
Jessica, I️ feel like this is the prime example of interdependence.
It bother me that a lot of people think that if you aren’t fully independent in all ways that you are dependent on others when in reality we are all interdependent with each other as human beings. We all need other people even if simply for social interaction. There is absolutely nothing wrong with interdependence it’s what makes the world function.
totally agree xxx
Amy Newsom-Leblanc yes this! I was at a disability conference yesterday and this was spoken about, interdependence, it was really good.
Spot on Amy!!!
Love your reply to this. It's wonderful and actually made me feel better Ty!
thanks for saying this
Jessica has the most beautifully soothing voice on RUclips and she doesnt even hear it ! Thats freaking amazing.
clisle l she could legit do audiobooks, her voice is so wonderful and her accent "refined" yet not snobbishly fancy. It's so delightful.
It is so beautiful isn't it? So magical and warm and soothing.
I love this perspective. Our society almost tries to make us feel like we should be unhappy if we're not fully 'independent' in the conventional term, like it's the ultimate goal. What about community and interdependence? And like you said, there are multiple varieties of independence as well.
this is so encouraging. I remember forcing myself to go places on my own just to be "independent" and then find myself there without the proper spoons and barely making it home again
I’m not physically disabled, but I struggle with clinical depression with makes me feel so sad and like I can’t do anything of worth. Hearing your experience puts everything in perspective and truly inspires me ❤️
You are completely laudable 💖 The fact you even worry about not doing enough or being enough just shows what a tremendous heart you have xxx
I know that Jess was feeling aweful while filming, but she looked stunning. The hair, the sweater, the makeup, her, the sick bucket off screen... Just. Stunning.
Ohhh I’m 31 and I day dream about driving! How glorious it must be to just want or need something, and not make a huge production about it! #thanksbody
I have hearing impairment ,arthritis and an auto immune disease. The internet and my channel were life savers when i had to wind down my consulting . although i could still write my books i felt the lack of communication and contact. my channel has been so much fun and helps me feel like i am still helping people. my husband is disabled too. we rarely go out without one another so the term 'independence' has rather taken on a new meaning. it is anything we can do together without help of family or friends. and that is just fine. I know i am a lot older than you but finding your channel has been lovely. xx many blessings from Scotland xx
I've just discovered your channel, and I'm absolutely hooked. I know I'm late to the party, but congratulations on getting married! Also (from your "why I don't sound deaf" video, YES YOU DID SO GOOD ON THAT IRISH ACCENT 10/10. I'm a derp and forget to comment on videos when I have a thought, but I really am loving your channel. I understand the struggles of "building a ladder" every day (as I put it.) when dealing with a disability, or in my case chronic pain, and listening to some of your struggles and how you cope with them helps give people like me the strength to always build that ladder, even if each ring gets a little bit harder to construct. Sometimes it's so hard to get out of bed, to do that work out, to walk to work, to shower, even to eat. Knowing that there are so many other people out there that have the strength to keep going even when they physically feel like they can't, pushes me to keep moving forward, too. My therapist once told me "If you aren't living every day with the goal of working towards your better self, what are you really doing?" Which then cause me to develop a really annoying phrase in my every day speech, which is "live your best life" and while that phrase is used by many people and it has a lot of different meanings. For me it reminds me to always work towards my better self, and if I'm unhappy I'm probably not doing something right. Thank you for sharing your life with this messy world of RUclips, because you give people like me strength to keep going!
This is a pretty relatable video for me. I have lived alone for nearly 4 years and I have barely left the house in that time. This year I decided to learn to drive.
I started a few weeks ago and I am going to get a mobility car. Independence is objective to the individual. Going to Asda by myself is going to be a monumental feat and I can’t wait for it. Wish me luck that I actually pass my test soon
Good luck Molly! x
Jessica, as someone who is severely depressed I can tell you driving is the best thing. When I do some errands the best part is being able to rush home with my car spend like 5% of the energy I’d use to get out and walk. Not much safe but still comforting!
feeling like you're going to vomit from your eyeballs is the best description of the feeling of migraine ever. So. Bad. I think independence is really mostly being able to make decisions for yourself and also, as you said, making these great videos online, yay! Totally agree with you. :)
As a person with CFS, malformed joints in my legs, IBS and have just learned that I will go deaf in at least one of my ears slowly over the next few years this channel is exactly what I need
Wow, Jessica, I so appreciate your honesty! I am disabled myself and you expressed with such clarity what it is like to accept the limits of "independence"! Thank you for sharing your positive outlook on life! Sending love from Oregon, USA!
Your independence is enhanced by having Clara or your wife. I have a similar circumstance in ways. I have a caregiver 4 days a week and my wife is a caregiver at times also. She is now quite sick so it's hard to be as free to move around as it was but I've worked out other ways and means. Having support allows you more freedom. I am the same. I soooo relate.
You're wearing a sweater my mother owns from the 1950s. It sits in her bottom drawer of her chest, along with other favorite pieces from her youth she hoped a daughter would wear. She was TINY, and I could never wear them! It makes me incredibly happy to see you wearing it.
The things about independence is YOU get to define what it means to YOU! So of course I agree! As an Occupational Therapist in the US we talk a lot about independence too, but ultimately each person gets to define what it means for themselves.
New subscriber who also has migraines, and "vomit from the eyeballs" is a very apt description of the feeling.
100% agree with this! Can be so frustrating sometimes when you want to run an errand or something but have to rely on someone else! But it just shows how strong we really are by the way we deal with everyday struggles! Hope you're doing well xxx
Watching your videos is really helping me feel better about my depression and how that ends up affecting my life. I know it's not anything like what you deal with but there is a bit of overlap and your videos have been helpful to me.
This made me feel so much better about things. I've been having a lot of trouble facing the increasing difficulties and restrictions that come with aging and my conditions, the need to be accompanied everywhere (even just for groceries! Ugh, it's just down the road!!) And all the damage that came from before I was treated, and reconciling that with the idea of "independence" people keep pushing at me.
Thinking about it in the terms of making decisions and creating the things I want to... That makes it easier. Thank you
seeing your videos has become a big source of strength for me, and i think this one resonates with me the most. im a disabled teenager living with a family who are not only all able-bodied, but who are also all in denial that im even disabled to begin with. it makes such a huge difference to see someone who understands where i am in my life and shows me that i can move forward.
Hi Jessica! I am a new subscriber and i just wanted you to know that your videos have really helped me navigate around my autoimmune condition and managing every day life involving college, work, and my illness. You are truly amazing and I️ am grateful to have found your channel! Thank you so much for being an inspiration.
So happy I can help you lovely! Well done for managing all of that 😘
As a 40 yrs old woman. Living with ME/CFS POTs too. It is hard to dependent on others. On my best day I could drive somewhere but not come back from there. Loosing a lot of IQ too. I can’t even do homework with my boys. You video touched me. Made me feel less alone. Thank you very much. I hope you are staying safe from the COVID. Continue your great work.
Thank you for this video! I'm in the middle of reducing my "independence," like getting help with shopping and stopping driving. These decisions allow me to work about half time, something I was struggling with when I was trying to do everything myself. People around me keep expressing sadness on my behalf that I'm "giving up my independence." I feel like I'm gaining independence by earning my own money! You've helped me feel better about my transition to less (more) independence. Thanks again!!
I've been disabled since I was born and the major part of it is that I have to use a wheelchair. I'm in my senior year of college and I still have to live with my parents, so it can be kinda frustrating sometimes when I see my friends live in their own apartments and such. I also can't drive a car and have to have people drive me, but it can't be just any car. It has to be able to carry my chair. That's the most frustrating because I can't just go wherever, whenever. But it's nice to know that there are other adults with the same problems.
My big issue right now is that chair's battery is acting up and I can't go to class unless I want to be stranded on campus.
New to this channel and I’m impressed. If you’ve never experienced chronic illness and/or pain, then to watch this content offers some desperately needed education on what that is like. You do it with humor, grace, and irrepressible charm.
Also, you have a wife, a home, and a platform that you use to educate and inspire. If that’s not independence/control over your own destiny, then I don’t know what is!
Cheers!
My health is in a bit of a downward spiral at the moment and I've been struggling a lot, but watching your videos the past few days has been so lovely. Your approach to your disabilities is so refreshing and your relationship with your wife is so adorable! I totally agree with what you were saying about your wheelchair - I can go so many more places and do so many more things using my mobility scooter than I could walking. And I actually have energy to do things at my destination, rather than wasting it all on the journey and worrying about getting back! Having online delivery for *everything* and a support network of friends who will happily help me with the washing up when the pile is teetering is what allows me to live in my own place and be independent that way. I think independence is very subjective; there's no one way to be 'a grown up' that when you hit that one specific milestone someone hands you a certificate of proof, after all
Super strong independent married woman, you are amazing, I am able bodied and love it when my wife helps out around the house, there is a lot of goodness in being interdependent. That how it is for me, I look after my wife and she looks after me. I think you and Claudia live in a similar space.
Definitely. Equal in all things. We complete each other as it sounds you do too ❤
Oh God I know this feel about "omg, it would be amazing to just drive somewhere and have the thing!" I can drive but don't have access to a car, and with my energy issues doing something like going to pick up loo roll or whatever is An Event. When I've seen friends just... go places, and it's no big deal, I'm like "whoaaaa."
I have just discovered you I suffer from fibro, CFS, P.O.T.S. ehlers-danlos syndrome, Ankylosing spondylitis, cerval spondylosis, depression, anxioty, severe eye issues, arthritis in EVERY joint in my body. I don't know why I decided to watch because I have gotten so frustrated with doctors. There is so much I want to say, but will try to keep it short. I personally feel all my maladies are a result of abusive childhood. My father was (and is) a very brilliant man. I was extremely she all my other sibling were very outgoing. All my life my mother would tell me to stop being so negative, there is nothing wrong. One doctor told me at thirteen that I would be in a wheel chair by the time I was thirty. Within the last seven years I have had six major surgeries, three back surgeries ( one of which they did not expect me to recover from), three knee replacements. Due to my EDS the knee replacement left me crippled and breast cancer and several minor procedures. I knew all the minor procedures were not going to work because I have had all of them before and they never worked , but each time the doctor acts like they are God and they can help.
I personally would enjoy hearing what works for you, even if it is medicine. I am on a crap load of medicine as it is. I do exercise four hours a night hoping to get some kind of function back in my knees. I have gone through so many therapist (them quitting on me). I had a therapist I told her that I was unable to get of be. That there are days that I am in bed over twenty four hours. The response I got from the therapist is maybe that is what your body needs. This really, really, made me mad because there has been so much written lately about the dangers of sleeping to much. I read that sleeping or being bed too long is equal to smoking three packs of cigerates a day. I then told her that my social circle is zero and once again nothing from her. I don't know about in the UK but here in the states there has been all kinds of writing about the dangers of both loneliness and being alone. My therapist offered nothing. The final straw was when she said I am where God wants me. I said God does not create anyone to be unhappy. My experience is that most therapist are like this one, they really don't have a clue and all they want to say is little niceties. I think she just liked talking with me because I am a lesbian as was she. I could not relate to much of what she was saying because I was much older then she and the whole gay scene was so different and under ground. I know diet at least for me makes a huge difference, but when you are feeling crappy fixing something healthy is not in the cards. I am on two new meds. for P.O.T.S and they have made a huge difference in exorbitant sweating I do and my heart racing from the smallest tasks. Headaches are a constant. I am not good at over doing it when I feel semi ok because there is always the fear that tomorrow will be worse. One final item, Is I don not find the depression and anxiety blogs any help. It seems that for most their depression and anxiety is a new thing and their sympoms are so minimal compared to mine that I just want to shake them. I to do not drive and regret it everyday. Sorry for taking up so much of your time
Thank you so much for your videos. I have chronic pain, I have stage 4 endometriosis and adenomyosis, it causes a whole bunch of symptoms and I struggle to deal with it because people treat me as defective sometimes. So watching these has helped me so much. I hate when people tell me "I hope you get better". Today is a tough day, the light is hurting my eyes, I have a terrible migraine and I feel nauseous but watching these raises my spirits, thank you so much. You're such an inspiration. Love from Cape Town, South Africa
Hey Jessica. i find things like Amazon and online shopping to be so amazing in terms of helping me be more independent. There are days where my legs are too sore or my eyesight is too blurry to do things by myself and in the days I feel well enough physically it can be a struggle mentally, I have a hard time with crowds so I'll avoid shopping at all costs. Independence for me is being able to do the things I want to do by myself, however small. I don't like to rely on people for help and I'm glad that a lot of the time i don't need to.
Calvin McLaughlin online shopping is such a God send lol
Sarah Camley it really is!
As a recent (2021) subscriber, this video is a source of serious comfort for me living with disability without the "official" disability title in America (social security disability/partial or full) or some other like institutional validation. But I still am! My disabilities make it really hard to get myself adequate treatment as well as adequate medical records which would allow to me again than American government validation- which is also a powerful social currency for Americans with disabilities, where ableistic ideologies are entirely the norm.
When I was a teenager, I definitely related to this. From when I was 6 weeks till I was 16 years old, I had a breathing tube; and the whole independence didn't the textbook definition. I could do everything myself but I still needed a nurse to take care of any phlegm that needed to be cleared out. Everyone's independence is different, especially when disabilities and chronic illness is a part of their life. Also, thank you for having a pain day video.
I'm disabled too and my independence is just in doing the little I can do and you inspired me to be open on m chronic.illness journey thanks so much Jessica for your videos! Also I hope you don't mind I mention you in my videos and I put your videos in descriptions so other people can benefit from them to.
Okay, but this sweater is giving me so, so much life. Nothing better than something cozy when you've not been feeling so great!
I totally agree! Independence is getting to live your life on your own terms, and doing what makes you feel most affirmed as a person. Also, GREAT Buffy reference
Independence of mind is strength. You are so strong willed and an inspiration to even non disabled people. You dont let your body stop you from trying to accomplish more. Im so proud that we have a positive empowering voice such as yours to brighten the internet. Much love! Also, unrelated, your style is my aesthetic. So beautiful!
Thank you! Such a kind comment x
COMPLETELY off topic: That jumper looks so nice and cozy
My boyfriend works in disability here in Australia, during a roll out of the national disability insurance scheme. He has taught me a lot about disability and I now know that independence means doing as much as you can and not having a paternalistic influence ruling over you telling you that disabled people can't decide anything for themselves. You are having people around so you can do what you can, but they don't dictate your life. You seem to have such a great support system :)
Big love for this video. I'm in a bit of a weird place at the moment where at 25 I'm less independent than as a teenager and the realisation that that probably isn't magically going to change. However, the internet is indeed a wonderful thing and the ability to online shop, communicate, study largely without having to leave my bed is great. It means I can use my energy for actual fun going out things!
100% agree on the 'don't call an ambulance' thing! A&E is indeed hell on earth. I now have a 'hospital passport' which I keep in my bag that runs through all my medical conditions, consultants, meds etc. Which makes them way happier to a) communicate via writing rather than attempting to understand them whilst concust/ on drugs! b) happy to let me go asap and trust I know what I'm doing and c) stops me having to repeat all the medical info 50,000 times. A* highly recommend (usually used for learning disabilities but totally adaptable for any condition, UCLH have the best template).
Also love your jumper x
I know you probably get this a lot but your hair looks amazing
Oh why thank you! 😊
It looks exceedingly beautiful here! Totally need a tutorial
Ah. I had never thought of independence in this way. Thinking of it in this way makes me feel happier. I think of crutches and things as a big bother! But if I think of them as helping me move better it is comforting
omg than you so much for the content warning! I was already kind of expecting it because I know you mention it quite often in your videos but as a person who has quite bad anxiety and panic disorders that are rooted in a crippling fear of vomiting, it is really nice to see a warning on a video so I can brace myself and not be caught off guard. thank you so much for that nice little gesture!
A toddler slug!! :-) That is a much kinder and happier description than my 'going at the speed of a drunk centanarian'! Thank you for these videos. They really help!
I know it's an older video, but I find that autonomy is much more important to me as a disabled person than independence. When I can have some say (as much as my body and capitalism and pandemics and wildfires let me) in what I'm doing, I feel centered and calm in myself, whether I need someone else with me to help me walk or get my meds or I'm doing those things entirely on my own. Being able to decide where I'm going matters more than whether I'm getting there alone. Thus, autonomy.
Oh Jessica, you always seem to know what I need to hear!
Having invisible illnesses and therefore "passing" as able-bodied has 100% skewed my perception, and expectations of my own independence.
Thank you for pointing out that because we are different, our independence is necessarily different too.
I LOVE THIS VIDEO!!! Growing up with numerous mental disorders/disabilities (autism, adhd, multiple mental illnesses), "independent living" was a huge thing that was focused on with my treatments. However, my parents, case workers, and doctors were so incredibly focused on getting me to what THEY felt would help make me reach independence in adulthood (I was a child-teenager for most of this. I'm 27 now.).
Using the driving example that you did, I never wanted to drive but in the States (where I live), driving is the primary transportation people use. With my ADHD causing attention difficulties, my Autism causing navigational difficulties, and my mental illnesses that cause panic attacks, dissociation and paranoia (among other things), I didn't feel safe driving; I've expressed that the idea of it terrified me from age 8 or so until today. But when I was 17 and wanted to learn public transportation routes and proper usage/alternate forms of getting around, I had to get my license no matter what I said/how I felt about it because, "you'll be more independent with a car."
Well, I have my license and a car, living out of my parents house too (yay for that though. ^_^), I feel far more isolated and dependent than when I was in college with no car on campus, using buses, trains, and walking.
With my Autism too (speaking only on how my autism acts), if I just start using the buses in a place I've driven in primarily previously it will leave me extremely confused with my daily tasks and how to approach them. I like to describe my Autism as if/then statements in computer programming - change a variable (the car in this case), my processing of how to respond to, react to, and complete a given task will essentially shut down entirely.
Things like that, and an entire range of how disabled people of varying types in connection with independence, is why I LOVE that you spoke about this. Independence is simply doing what you have to do to function in society. Do you need another willing person there to help, like this lovely youtuber? Still counts as independent. Do you need to do things more slowly than the average? That's fine. Do things atypically? Also fine. Etc....
As long as you're trying and doing what needs to be done, then you may have reach "INDEPENDENT" status.
Even if you can't reach you're personal independence ideals, or your families independence ideals, just try to be a good person and have some fun. Try to just make the best of a difficult situation. Easier said than done sometimes, but where's the harm in at least trying? ^_^
I am processing the fact that I am going to need around the clock care as I have covid and just can't keep up with things and have tried to make it on RUclips but it hasn't really happened for me and I am looking for a way to make some pocket money.
thank you, i appreciate these ones so much. being able to mirror yourself in someone who is having a bad one means a lot
Discovered her channel yesterday and I just can't stop watching her videos. She's so funny, intelligent and not to mention pretty
Seen you on my recommended feed, and honestly I'm really happy I did.
I do not have a physical disability per say, but I have severe panic disorder/anxiety. It really controls my life but watching someone like you who has overcome so much really motivates me to keep my head up.
Days now just mold into eachother, I can't work...though I'm trying and pretty much inside all the time. Thanks for sharing your life.
I relate so much! I have Ehlers Danlos Syndrome (hypermobility /frequent dislocations), POTS, Narcolepsy with cataplexy (literally any time I am startled, pain spikes, POTS kicks in or high emotion or lack of sleep TRIGGERS IMMEDIATE DROP ATTACKS OF PARALYSIS) ...long story short, I cannot be alone either.
You are wonderful. I love your videos. I love your charm. You've got me inspired to start my own RUclips because you have changed my recent life, and keep me sane knowing I'm not alone in the medical calamity life. -Katlyn Katastrophe
“I feel like I’m gonna vomit through my eyeballs” literally I’ve never heard a migraine put in better words
What are the odds that the same day I subscribe is the day a new video is posted?? Fantastic video by the way, you have really opened my eyes to the reality of living with disabilities.
I completely agree! So grateful to be able to connect with internet friends and run my RUclips channel. Also, being able to order groceries and anything else I need online is incredible. Gold star for whoever thought of online grocery shopping ⭐️
Jessica Kellgren-Fozard a tip to not forget to take your meds after the alarm goes off is to either not shut off the alarm until you’ve actually taken the pills (which can be rather irritating) or hit snooze & then after you’ve taken the pills turn off the alarm. I love watching your videos!
Top ten!!
Hope you feel better Jessica! Sending A LOT OF love and comfort and sweet potato to your way.
Ha ha, oh the sweet potato always pulls me through! x
Jessica Kellgren-Fozard Every fall they sell baked whole sweet potato here in northern China. One of the 549 reasons of why I love fall. So sweet and creamy like melted honey
Sweet Potato partyyyy 🍠🍠🍠🎉💝
That sounds delightful! We have men in top hats selling roasted sweet chestnuts on street corners. (yes, it's THAT British)
The way you speak so softly in this video is very calming which is making me really sleep which is not good because i have work to do.
You are truly inspiring. I suffer from Chronic Fatigue Syndrome as well, and your videos are so amazing and real while also being inspiring and hilariously entertaining. Thank you 💛
I just want to say that watching your videos makes me feel like I’m not alone. I don’t have all of your disabilities, but I do have PoTS. Just knowing that someone understands what it’s like to have a limited about of energy or “spoons”, and that someone knows how hard it can be just to stand up for a while. You give me hope because you don’t let it bring you down and you keep going on. You are a real inspiration. Today was a low day for me, just getting up and walking around the house is hard. But on better days I can get out and walk around for a while. I am also lucky enough to have a beautiful woman in my life who loves and cares for me, just like you do. Keep doing what you do, again, you are such an inspiration.
You saying you feel more independent in a wheelchair than on foot really resonated with me. I have a learning disorder and process information differently. I find that when I go shopping, I feel most aware and capable when I have a friend with me, double checking lists with me and making sure I don't lock my keys in my car. It's become such a point of anxiety for me that it makes domestic tasks aversive to me. Your video's helped me articulate that capability and success have become more important to me as an adult than independence. It only makes it more fun that I have someone there to share those successes with! Especially when there's really great people in one's life. I also feel like family structure is a bit different now than it used to be. Western culture strives on this sense of independence. It would be neat to see that change in some ways.
I'm watching this on day 2 of a fibro flare, and a migraine. Laying in bed, and yes. To everything. My family doesn't understand yet that I cannot be home alone, that I have to be reminded for meds and food or things get bad. And even with the pain I'm currently in, I can hear you, and respond. It's an important freedom.
Jessica... THANK YOU... i have recently found your channel (you video about dating someone with a disability popped up one day, and my partner is deaf so I was curious and instantly fell in love with you and your wife) but then when i found your vlogs discussing your other disabilities to some extent i felt so connected to what you were saying. Ive fought illnesses my entire life but recently have been struggling with a proper diagnosis and when you talk about how it feels your body is constantly telling you something is wrong, but it doesnt know what... I GET IT! and the chronic fatigue sounds very familiar as well.. but i have never connected to anything more than your comments here about fainting in public and not wanting people to call the ambulance (even though theyve got the good stuff) it being the hospital (US here) that is hell on earth ... i cried i was laughing so hard because I GET IT!! the number of times ive passed out in public and woken up in the ambulance just to say "oh crap!" Thank you for your vlogs... during a time where i feel like everyone thinks im lying or crazy (except my partner.. she sees its real) ... you make me feel less alone and less crazy!!
Oh yeah, I keep a sick bucket under my bed, too. I haven't used it in a while, luckily.
I found this account yesterday and I already want to hug her and meet her and say hello, my god she’s adorable!
We have very different diagnoses, but I feel so seen by this video. It feels like you're telling my life story with the names changed for safety
I really love your sense of humor. I'm new to this channel and I honestly can't stop watching and learning.
You do so well though Jessica. I'm a perfectly abled person, and you've achieved things I thought would be too much for me to do! You're an inspiration, not only to disabled people but to abled people as well. That says a lot. You're wonderful!
Hi Jessica, I have just found your vids and I am loving them, and not just because I’m a huge fan of vintage chic or the fact that you wear it so well. I work as student support with a group of adults with cognitive and intellectual disabilities who are learning those independence skills. While I would hate to speak for them, I know that quite a few at least do agree with you. It is amazing how adding a person can create independence. So many with disabilities rely of family to assist with everything, which particularly for those with intellectual disabilities really reinforces to those they encounter and often to both the individual and their families the idea of perpetual childhood, which is awful. One person I work with went grocery shopping with their support worker for the first time, they were so excited that they got to plan their own meals and decide on chicken soup instead of beef and barley and pumpkin instead of potato and that they could get a pack of their favourite biscuits. For them until that point, mum had done the shopping and mum decided what they got. Having support gave that person a freedom and independence they had never had before and it gave them a new sense of self they hadn’t had before. It was awesome and it’s why I do what I do.
Recently found your channel and you're really helping to open my eyes about these things. My mum has fibromyalgia so understanding chronic illness a bit more really helps me. Thank you for making your videos
I haven't thought about how the definition of independence changes with age and ability in a long time. Man, I remember not being able to drive, and when my medications made me so foggy I couldn't even walk anywhere. The way it changes is fascinating to think about
I'm some what amazed that someone implied you werent independent, one of the things I noticed and thought when I started to watch your videos was that you were able to be very independent (I do not mean that in a condescending way, I am disabled myself and Im just seeing it through the eyes of someone with no independence). You may need help from people due to your disabilities but that doesnt mean youre not independent. I think what you do is amazing and you have a really great outlook on life.
And it's so frustrating when people talk as if you will 'get better' within a time frame and then 'everything will be alright', I know they want to say something positive or encouraging but it's really not a nice thing to hear when you know you can't 'get better', thats not how it works. And I totally get how you feel when you say, it would be wonderful to just be able to go outside, go to the shop and get the thing you need, and then go home, all by yourself. That sounds like a fantasy.
I think independence is having the knowledge that you can choose what you want/don't want, or what you want to do with yourself. You don't necessarily have to have the ability to do it yourself, but people are not all alone!
Independence is definitely a state of mind.
i feel like being “independent” is the most amazing yet scary thing out there, like yesterday at 5am i decided to go get some breakfast and waited outside for 2 hours just to go buy an energy drink and a lollipop from the grocery store, it was honestly sooo amazing but now after being bedridden for a beautiful 26 hours from pure exhaustion i see that independence brings a lot of bad things as well, i can’t even imagine my life without some sort of help with things like food, medications, pain management and mental health problems
I agree wholeheartedly. We all have limitations. Some not so obvious. You lead an example of effort and optimism above average! I believe seeing the advantage of having someone's help means your self esteem/identity is independent from outside influence. Lots of people can't accept needing help, because they think it has something negative to do with their identity. Yet, our worth is not synonymous with solitary achievement.
I agree with your definition of independence. I don't think any person can do everything they want, and you do an excellent job of being the best YOU ! And you share and work to help everyone. You are successful in your career, personal life, Marriage and Motherhood. Some limitations can have a "work around" and alternatives. I think you are doing very well and it's plain to see. Well done !!
I absolutely understand my illnesses are chronic and progressive also. Hugs also I understand I can't drive either. If no one is here I'm stuck to bad. I totally get you I mean I too my mental thoughts sometimes are I want to get up take a shower, clean the floors and go to the store go shopping. " Reality" Get up lay on couch, grab ice pack, heating pad and drink. Watch RUclips. Try to not feel sorry for myself! Geez I've edited this like 4x but I swear our lives are similar. You made me laugh and cry! Finally feel like someone truly truly gets it. Ty so so much! BTY I just love you guys your amazing beautiful and lovely.
This video helped me understand something other than what you pointed out. It made me realize that I've been so worried about my future independence because right now I live with my family and they AREN'T DEPENDABLE. By the point that whatever mysterious illness I have might get severe enough that I can't leave the house and do things there's hope that I'll be living with people I can trust. Maybe it wouldn't be so bad to be dependant if by the time it happens I have the same kind of people in my life that you do.
I once called you Wonder Woman, I stand by that ! You are a lovely person ! I wish that all your days are good ! I feel you and Claudia are blessed to have each other . We get so much strength from your videos but also so much joy 😊😊😊😊😊😊😊😊😊😊
I love this. I found your channel only recently and have been watching a bunch of your videos, and you are truly inspiring. As a fellow spoonie living with chronic illnesses, I think this video is so spot on. I will have to show it to my friends, because people frequently question how well I'll be able to lead my life being so sick, and I think you're totally right that chronically ill people just have to define independence differently. I'm a filmmaker, and I find independence in writing and creating stories. When I can work, it's exciting, but sometimes I can't. I spend large amounts of my day exhausted, watching Netflix, and playing bubble spinner online because my brain is too tired to think of anything, but I'm becoming more and more okay with that. I'm starting to accept my own limits because I don't see the utility in fighting them anymore. I wish I were brave enough to start a youtube channel; it seems there is great community to be had here. But I am so glad that your channel exists! Thank you!
Thanks for tagging the mention of vomit. I'm a recovering emetophobic so if I was having a bad day, I would have seen the warning and clicked away successfully avoiding a panic attack. Thankfully I was having a good day and could watch and enjoy the video. Thanks!
I just found this channel several days ago, while in the midst of a horrible fibromyalgia flare, and I can't express the enjoyment I have experienced with most every video I've watched so far! You speak so truthfully about living with disabilities, especially about us "not looking disabled enough" (whatever-sure, I love being disabled so much I'll gladly share it with you-said no one EVER)! I LOVE your retro style and you wear it as gracefully as any of the lovelies from that time. My mother-in-law was about your age at the end of WWII, and with my husband being an only child, she passed on to me pairs of the daintiest of gloves in many colors. Although I live in the U.S., if you would enjoy the gloves, I would be honored to send them to you. She would be tickled to know that someone as yourself would wear and cherish the gloves. If you'll reply to me, we can work out how to get them to you. I love watching Claudia and you together in the videos. Y'all make me laugh (HINT: I'm a true southern belle, so expect lots of y'all's in my messages) and actually help me forget, just for awhile, of how terrible I feel. After binge watching your videos, I've decided that if y'all (there is that word again) want an "adopted mum" in the U.S. I'll gladly volunteer!! Just too dang cute!
I do agree. I'm independently sitting in the bed watching you at 6am because I can't sleep. It's what I want to do, when I want to do it and I adore it!
I can't get in a car and drive to get what I want either, but I can order things online and have it delivered to the house! Everyone has a different idea of what being independent means to them and that's perfectly fine!
Really hope your migraine got better, Hun!!
Honestly,how can there be such a charismatic person😫I love your videos:D
I love your videos and personality you are amazing!
I'm going to add subtitles into my videos, my step mam is deaf and tbh I never really thought of adding them in but she can't currently watch my videos because of this which I don't like. Anyway how did you do it? Do you babe to physically write out everything you say in the videos?thanks for your help
Hi Demi! I can't make subtitles unfortunately, I rely on friends and the RUclips community to make them x
thank you so much for your videos. it means so much to me to be able to watch these. i think being able to see independence in a new way can also help me because it's so easy to want to define that word the same way as i did when i wasn't disabled, or thought i wasn't. but doing so is actually more disappointing.
Excellent video! I work for the government in my country In a department where 90% of people I come in to contact with have at least one disability. We focus on independence which can be an odd thought for older people especially carers or parents of someone with a disability because their idea of independence is so fixed. "Well johnny is never going to have independence because he lives in a group home and needs one on one support" kind of thing but we try to frame it as independence being this spectrum and for some people it is living alone with no supports and for others it's being able to choose what you get to do for the day or being able to be involved in prepping dinner while living in a supported environment with round the clock care and one on one assistance.
Independence is very individual for sure. I feel like independence for my students means that they have agency in their own lives. They might not be able to drive or have a 9 to 5 job, but that doesn't mean that they can't be happy, fall in love, have lovely pets, find a job they actually like, or take up a hobby. They deserve choices just like anyone else
Thank you. I love your honesty while mixed with your witty sense of humour. Having a chronic illness is so hard for some people to understand, but you explain it so perfectly. We have to take on things day to day, and meet ourselves where we are at that day.
Thank you for showing your time with a migraine, I have chronic migraines so it’s kinda nice to see that I’m not alone with that
Sometimes I look at the videos RUclips recommends to me and I'm like "why tf would I want to watch that?" Other times, I find a hidden gem that I then spend hours watching. That... sounded more creative in my head, haha. Anyway, I'm so happy I found your channel! You and Claudia are a joy to watch and I plan to spend the next few days watching all your videos. (Also, you may or may not have made me want to binge-watch Buffy again.)
I could listen to your voice all day
You are very charming and quite funny! I'm really enjoying your channel, I think you are a raw, uncommercialized, RUclips personality and this site needs more unique people like yourself.
Tips and tricks for people with a disability or a chronic illness in the kitchen... that would be a great video to watch! Keep up the videos Jess! Xx
Thanks for making me feel less shitty about myself by addressing these issues ❤