13 Things People with Chronic Invisible Illness Want You to Know
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- Опубликовано: 2 авг 2024
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One of the best ways you can love the Health Warriors you know is to try to understand their unique challenges. Your understanding makes them feel less alone and helps combat common, painful misconceptions about them and their illnesses. Health Warriors: I hope this is something you can share with your communities! I know I am making generalizations for a broad, diverse population, so if you have anything you would like to add, please include it in the comments below!
Information in this video is not intended to treat or diagnose any medical condition and does not provide medical advice. Nothing in this video should be misconstrued as such. This information is intended for informational purposes only. It is not a substitute for professional medical advice, diagnosis or treatment.
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I'm a man, 20 years old, suffering from this horrible condition, someday I just wonder why I am alive to suffer.... We are strong, we are the true warriors. I love you all
I remember being too sick to engage in the basics of basic living and do what I needed to do to heal. I was bedridden from Lyme, EBV and toxic mold. Bedridden. I didn’t think I should need to ask for help bc I was there for my family and friends quite frequently for lesser challenges. But when person A asked certain other persons to help me get to doctors’ appts, get food, make sure I was alive, they had excuses ranging from needing to get nails done to not wanting to be burdened bc it’s not fun for them. It was traumatic enough losing my health to the point where I couldn’t work. That was terrifying bc I was independent, needed to be, many people depended on me personally, professionally and philanthropically and anything less was worse than death. But, the most traumatic toxin was realizing all the narcissists I was surrounded by who blamed me for becoming a sick burden instead of being helpful for them. Probably the worst time to find out who has your back and who doesn’t.
I'm so sorry to hear this, l understand you perfectly, take it one day at a time.
Who has fibromyalgia MEEEEE 🙋🏻♀️ 13 years old diagnosed 10 and has many other invisible diseases like acid reflux scoliosis plus neck lumpy nodes no doctor knows what’s wrong I did loads of tests nothing ya plus dermographism
@@iilavenderii21,
I’m so sorry. 😢 I was super young also when I got sick. By chance might you have had a Fluoroquinolone antibiotic such as Cipro or Levaquin? If so, please try magnesium and liposomal glutathione. ❤
I’m suffering in silence as we speak. Every single day is a struggle and some days are good while other days like today are horrible. Thank you for this video. I’m working hard to try and find some resources so that I can get my quality-of-life back and not lose my job. It’s definitely been a journey.
"You don't look sick" "you are the picture of health" "you talk too much about your health problems" . . . don't forget the eye rolls and backbiting. It is just easier not having friends.
At least we can choose not to have friends. Think about those with ignorant family members.🤦🏻♀️
The amount of times I’ve had DOCTORS tell me I looked fine or I looked better than last time. Like dude, my sh*t is internal. Just because I smiled when you came in the room Doesn’t mean I feel good, especially when I told you I don’t.
@@misbahailia3345 That’s why I have what I call a Chosen Family. Some of the people in it are “blood,” some aren’t.
I deal with this on a daily basis. People think it’s me being awkward when I can barely look at them in the eye. They don’t understand how in pain I am. If I feel like someone is judging me It’ll make it worse.
Thank you. It's so hard. My family doesn't believe anything is wrong. They help me, but are constantly criticizing me. They think I don't want to work. I miss working and a social life.
that’s what hurts the most, not being believed by the people closest to you. i hope your support system is better today than it was three years ago.
Yes, that regularly being asked “so when do you think you’ll get back to work?” and just not knowing what to say is awful. Like, it could be a year, it could be never, and both options sound daunting at this point. Stop f****** asking. Instead of asking me a judging question, ask me how I’m doing, if I need help, etc.
I have an undiagnosed brain disorder that mimics the symptoms of being drunk. I have a lot of tattoos so everyone assumes I'm on drugs.... I just have poor balance and speech patterns.
This is so good. I started tearing up as well when you described the time you couldn't go to the grocery store or cook. I had a period of time like that too. I was eating whatever was in my pantry, cans of tuna, nuts. Because I had no appetite and no energy to shop or cook but I knew if I ate nothing I'd feel worse. I didn't even think to ask for help because I felt like it would seem so dramatic and I was a bit in denial about being chronically ill because no doctor could figure out what was wrong with me. But looking back at that time, I was so incredibly sick and understandably, eventually had found out I have lyme and mold illness and at that time I was unknowingly living in a home that had black mold. We really do not exaggerate our problems. Thank you for making this video.
I’m in tears as I think about walking the dog this evening. Sometimes people pat me on the back because I “did” something, not understanding the agony I’m in because I did it. They want me to look at (just) the positive, when I’m crying out for help. It’s like I am sending out distress flares as my boat sinks, and having someone respond, “Wow! Look how far you are from shore! Good job.” I’m sinking! Not looking for a pat on the back!
Having someone dependent on you when you are chronically ill can motivate you to stretch more than you thought you could, but it can also tear you down when you over extend your abilities. My dog is so precious to me, and he alerts me at times when I need meds, but he also causes trouble when I’m unable to walk and tear down muscle trying to meet his needs. I live miles from town and wouldn’t ask my friends to drive over here to care for him, or fix me a meal, or many other “little” things that are mountains to me, yet my needs are still there.
Oh my gosh, the level to which this got me in the feels! I don’t have a dog, yet I relate to the context of this so much. We can be in such distress, just going through our daily lives, and others (in a pity voice) are like “aw, good for you, you went grocery shopping.” Meanwhile, I literally still have some of the non-refrigerated groceries in my trunk from almost 2 weeks ago.
I dont usually comment on videos, but this is pure gold. I had already shared it with two of my chronically ill friends by like point #4. 👌💪❤
Oh Katrina, it is such a hard journey! I hope yours is full of hope this week.
Watching this while sitting in my car after a pregnant lady took the one seat I can sit on and watch my 5 yr. Old son in hip hop. I have RA and Lupus and Fibromyalgia but look okay. So I get dirty looks and skepticism everywhere. I am having a hard time dealing with taking my son to and from school and go to soccer, hip hop and folklorico. Plus I have to drive 1 hr to my Rheumatologist because Tucson Rheumatologists will not take you of you've ever been diagnosed with Fibromyalgia. Also have permanent nerve damage from endometriosis which took my pregnancy and led to a hysterectomy. I would give anything to work again, to stand for an hour without paying for days, to not need immunosuppressants and pain medication. Sorry just really ticked with my body. I love your explanations because they are spot on. Thank you.
That would piss me off too. Just because we Look normal doesn’t mean we are. You have value!
I don’t know if this is helpful or not, but since I struggle with pain and frustration at what my body can’t do as well, one of the things I try do on my own (and if not then with my counselor) is: come up with 1 thing each week that my body did well.
It ranges from “I made sure to eat twice a day this week” if that’s all I had the energy for, to “I made a couple phone calls this week even though my energy was low from anxiety” to “I took a shower for the first time in a month.”
This made me cry, so true
It is so, so hard; Melissa. You are not alone!
I cannot thank you enough for this video, I really can’t. I’ve been in such a state of despair with my chronic illness and watching this video makes me feel SO validated. Thank you for this video because it will help me in explaining to my family and friends how they can help. This was just such a silver lining to a very grey day. While there is no cure for my illness, it is comforting to know that I am not suffering alone. Thank you.
This is amazing and I’m thankful someone is saying it. I want nothing more that for my friends to watch this . It’s hard to talk about medical stuff, but it’s that or nothing because it’s the only thing you have to talk about because you can’t do anything 😑
I need to move in the near future, and i’m considering looking into assisted living. I’m not sure if they’ll take me though since I’m “young” as doctors love to point out. But it’s so hard just to get by some days.
There’s something about not being to feed yourself that’s really upsetting. Chronic illness makes you so vulnerable. All your points are very valid. Thankyou.
you describe me. I lost friends....they go on with their lives and i am glad for them. covid makes it worse because I can't have anyone in my home. my youngest son 29 lives with me. He lives with me. he has lyme but praise God he is dong better. it is hard to eat. i can't cook. i want to share this but i feel that anyone reading it will think i am just asking for pity or drawing attention to me. I am so grateful for you.
You’re not asking for pity, but it IS okay (and good, albeit hard) to ask for help. Maybe just share it with a select group of friends if you still feel unsafe sharing it large-scale.
Amazing good points! Probably one of the best I’ve seen about the day to day with Chronic Illness. I wish I could give you a big hug when you teared up because it can be so hard to express your true thoughts to people when you are suffering and NOT break down! You’re a beautiful warrior!💖
Health Warriors: I hope this is something you can share with your communities! I know I am making generalizations for a broad, diverse population, so if you have anything you would like to add, please include it in the comments below!
Made me cry too
All the things I don’t have and we need
Merlinazz, yes: SO MANY THINGS the health warrior needs. I hope you experience hope and encouragement this week.
This was wonderful! I'm past the worst thank goodness, but watching this really reminded me of how awful it was for so many years. If you do ever make another, I'd request that you say "he or she, or they" instead of just she. I know that you're female and most of us talking about chronic illnesses are too, and sometimes it's just easier to say just "she" even if "he" is implied. But there are men who are chronically ill too, and out of anyone, sometimes they need this video more than anyone, in order to feel validated and increase awareness that men get sick too and need ongoing help too. There's a stigma around meb and sickness, so many more groups for women and their illnesses than for men, but men need them too.
I know you know that. But if you ever do make another video, this would be a great addition!
This was really great. Thank you for speaking out for all of us, representing us. I love your channel!
Wow. Thank you. This video made me feel like I just won a million bucks!
You really nailed it,hang in there like we're all doing
SO GOOD SARAH! You articulated all of this so well. I’m definitely going to share this video with others. Much love. 💜🙌🏽
Oh I'm so glad, Mandy! Thank you so much for telling me!
The accuracy in this video. The first day I dealt with my pain and having an episode i was in so much pain that I couldn't cook and starved because when I tried I almost burned down my kitchen trying to cook asparagus .
Thank you. I’m going to use your video to help people around me understand me better. Thank you so much!!
Amen! You completely get it! ♥ 🕯
It is such a hard battle, but man, it can equip us to help others, can't it?!
wow you understand me!!!
A lot of these things, the people don't really think of us. They just pull these things out of thin air to dismiss us. They're not trying to understand and so they say things like "it's all in our heads".
It’s often when they can’t grasp it (doctor or not) or haven’t dealt with pain like that themselves that they use phrases like these.
@@rebecca7245 with all due respect, that's not true. It's from their arrogance from going to medical school and being more rich and successful than us. And so they are prone to dismiss us. If we suggest what we think we have, the physician will try to say it's anything but what we said, because their ego can't let us be right. No doctor is incompetent. They're just proud and arrogant and that makes them deny the truth because it hurts their pride. So they dismiss us by minimizing what were going through, making it out to be all in our heads, and/or try to blame it on us. It's all from a dismissive attitude. Royalty doesn't value what us peasants have to say, so they dismiss us, like "get out of my sight, peasant."
Wow you nailed each and every one of these points. This year it makes 30 yrs when I was first diagnosed wth an autoimmune disease. I was 14 at the time and I was told it was Rheumatoid Arthritis. In the years that followed my diagnosis usually changed bases off each new doctor I saw. One would say Lupus, then back to RA and then my favorite "We may end up naming a new autoimmune disease after you cause we dont know what it is exactly". It has progressed so far now though that its not so invisible. Ive lost 80% of my hair, cant keep much food down so i look like the corpse bride. Its a good day if I can make it down my steps. Sad thing is even after all this time....people still have the same stereotypes you are listing..
I am sorry to hear that. Did you tried testing for Addison disease ?
This is 100% accurate.
Yyyeeessss!!! Thank you for posting this. Severe post partum depression survivor here as well as Generalized Anxiety Disorder. Many people assume my smiling selfies means I'm healed. Thank you
I'm writing a paper for school about invisible illnesses, and I came across this video.
I know I don't have physical problems as bad as a lot of other with invisible illnesses do, but that's just because I push all my mental and physical problems to the side, until they pile up and overwhelm me.
I'm hoping to get answers soon, but sometimes it's hard to ask for help, because I don't know what help I need. It sucks!
But I really loved this video! ^^ I wish I could be as much of a warrior as you are!
One of the most important things I’ve learned/am still working on is learning to acknowledge your pain. Whether it’s physical pain or mental/emotional pain, try to focus on it when you can.
Sure, there’s times when you’ll have to push it to the side and focus on other things, but when you don’t Have to push it off, don’t. Let yourself feel it. Even if you can only do so for a moment.
This helps me to not get to that “boil up” overwhelming point.
@@rebecca7245 Thanks, I really needed that!
I had near forgotten about this comment, but it's even more applicable now.
I have been spending the last week ever extra second I have glued to my screen to turn off my brain. If I'm not doing that, I notice my neck pain more, and I start ticking rapidly.
Anyways, I'm trying to actually do something, instead of just distract myself to make my problems go away.
@@emmafeickert8855 First I want to clarify and say that I don’t think it’s Always a bad thing to distract ourselves. Sometimes I need to use distraction As A Tool for a little while until the anxiety calms down enough for me to focus on something, for pieces at a time, until I can move on or maybe I need to distract again. Is it healthy to always do it, no. But can it be used in a healthy manner in doses, absolutely yes.
Next, I’m glad that you got reminded of this, but I’m sorry that you’re dealing with so much pain and frustration! Have you spoken with a doctor Recently about the pain and tics and/or gotten a second opinion if the first one went nowhere?
Body Check-In Activity to consider practicing when you notice pain/tics/etc: What does it feel like? Where do you feel it? Does the pain spread anywhere else (like down your arm, up your head, headache, stomach, etc)? Are there any emotions you feel when you notice the pain?
The activity doesn’t take long, and might seem simple, but it can be hard to do, especially at first, so be patient with yourself if you do give it a go. It gets you to sit with the pain for a moment, notice it, learn to get comfortable with the discomfort. If you experience pain in multiple areas, check in with each spot. When you’re done, then you can move on and focus on other things more/tune out the pain some.
Just giving yourself that 1-2 minutes or so of attention isn’t magic; it doesn’t make the pain disappear. However, it does get you more in sync with your body by learning to listen to it (when it’s appropriate) and can therefore let your body begin to learn to alert you sooner when something’s wrong (before it gets Really bad) because you know how to listen to your body instead of always tuning it out. It’s okay if your mind wanders while you do the body check in; just take some deep breaths and gently ask yourself the question again.
@@rebecca7245 I'm hoping to get to a chiropractor soon, but I keep forgetting to call until the place is closed. I'm going to set myself a reminder for that. I also plan to talk to my physicist more, as my meds don't seem to be helping much.
Also, thanks for your advice! I'm going to keep those questions in mind for my calendar. (i use my calendar to track anything wrong or unusual throughout each day)
Explained so well! ☑️
Thank you! ❤
Thank you for making this... I really needed to feel like someone understood
Perfect!!!
You are such a beautiful soul. And describe “us” so incredibly well. We need in this society more educators for people that work in the health field. Nurses, doctors and even costumer service people have no idea how much we suffer and need a compassionate person when they are dealing with us.
As I told my nurse today, I’m in constant pain can you put lidocaine on the site when you are going to put my IV? Any little thing where I can avoid pain makes such a big difference
The MOST BEAUTIFUL Validating Video I have EVER Seen- Thank You!!!!😭
Your video meant so much, I can’t stop crying.
Thanks Sarah for your honesty and completeness. This goes in to such great detail!
This is spot on Sarah! Thank you for sharing this! I felt so understood having so many of my desires and needs voiced. Your sister just referred me to you. We went to Fox together!
I've always said I'm fine, I'm ok. I'm not. My smile is fake. My pain is real, and now I've been hospitalized twice. Thank you for this video. I have shared it.
I’ve had several doctors (lately, a GI doctor in particular) regularly tell me that I must be doing better because I look good/because I smile, ignoring the fact that I tell them I’m not doing well.
@@rebecca7245 I'm so sorry. It sucks that we have to advocate so much for ourselves. I wish all the best for the future.
Sorry to hear all this. I also live with chronic illness. How are you both doing now? Do you know you can join chronic pain peer support groups and build a community of like-minded people who understand, support, validate your pain experience...
Thank you for this video Sarah. You are so lucky you had a wonderful and caring people around you in your process. I had noone to take care of me, carry me, pray for me or help me through my darkest periods and i wasnt able to ask for help of fear of being seen as lazy or hipohondric because i didnt "look" sick outside. I guess my healing process would be much faster if i had a family or friends who would be around when i most needed help.
Thanks for this video Sarah. You are brave to share good advice which is a shared experience for many of us.
Thank you, MsRivera1980, for your encouragement!
I'm currently presenting with many symptoms that are indicative of a chronic illness, but the Drs. still haven't come up with a diagnosis. One thing that really hurts is I know that lots of people think I'm "just lazy" because I'm fat. I gained lots of weight while pregnant, and then had an emergency C-section, so I'm still about 30 lbs overweight. Even when people don't say it outright, I can see them thinking that I'm simply trying to get out of things I don't want to do.
First of all, f*** them. Second, gaining or losing weight quickly can both be signs of illnesses. If you haven’t found a diagnosis yet, keep fighting, try different doctors, ask for referrals if needed, etc.
@@rebecca7245
Tk you for your encouraging words! 🙂 Fortunately, I've been blessed enough to have finally found some good Drs.! They knew the tests to run, and the questions to ask in order to figure out what's actually wrong in my body.
Turns out, I have 2 chronic conditions (both stemming from dysautonomia) that are causing the majority of my issues. I've been diagnosed with Postural Orthostatic Tachycardia Syndrome (P.O.T.S.), and Inappropriate Sinus Tachycardia (I.S.T.). Obviously, I wish I never have these conditions to need a diagnosis for, but since I do have them, it makes me feel better mentally to have the diagnoses because I know my symptoms aren't all in my head (like some ignorant people would suggest).
I say all this to say, you're right about not giving up until you have the answers you need. If anybody sees this post who is struggling with mysterious health issues they just can't get an answer/treatment, my experience (along with countless others' experiences) prove that you must be your own advocate!
@@crystalpreuett9539 I’m so glad you found out what you have! It’s so hard to be your own advocate sometimes when you don’t even have the energy for “normal” things, but like you said, if you don’t do it, no one else will. Plus we need self-advocacy more than others.
Having a name(s) for the diagnosis (diagnoses) can feel life-giving. Even if it’s non-curable, just knowing what it is and what can (and can’t) be done to help it helps us be able to reframe our thoughts and our lifestyles in a way we didn’t even know we so desperately needed.
Well said! I wished more people could see and hear this. I just only want to add my two cents and say that depression (that is on a chronic clinical level) IS a disease of itself. I'm sure you know, clarifying just in case. It does have a platitude of physical symptoms and can also lead to this cycle of trauma which would generate more and more symptoms... And yes, not working indeed is a huge blow to ego and sense of purpose - but I wouldn't personally say I lost my dignity per se (though I do understand and agree with what you meant by this). Anyway, this video is gold, I empathized with everything you said. If only more people tried to understand at least something of this. Wish you all the best! :-)
Personally, I miss my career very much, and I wonder if I’ll ever get back to it. I don’t feel like I have no dignity without it, but Other people in my life definitely make it known that not having a job is cringy/I’m less-than. Their Tone when they ask “how much longer do you think it’ll be before you get back to work” (after 4 years without) makes it clear.
Our society is very heavily based on what-you-do-is-who-you-are, so it’s very natural for people to feel a lack of identity (whether indefinitely or just for the first couple years) when they cannot work.
I agree with you, my son was in your situation he was Publix smiling bagger. He should have gotten disability even now he should get disability he hasn't recoverd fully I know he he is trying I was and now in that situation one day good next day I collpsed I don't even have stringth to eat Hecks same way. He doesn't say anything so speak for him. He was thrown out of religious places for telling them your health problems.
Wow wow. You are so smart the way you described every single detail of what living as a health warrior. I love that. Can I copy cat? I’m s heath warrior. Thank you 🙏🏼
💯
I was told dnrs gets everything better
❤❤❤
What about “his” work as a health warrior?😊
My neighbors help me they make sure I am not negetive and pumping their ego.
Is hashimoto's a Chronic Illness?
I have the biggest crush on you ugh.
I'll never tell my doctor if I fell again they always over exaggerate!