If I’m being short with my replies while having a face to face conversation, it’s not because I don’t want to be having the conversation. I’d say that if it was the case. It’s because talking for too long hurts my vocal chords.
That yes today I am getting around great and you saw me this way and then you think I am lying next time because I can’t do stuff. It is a day by day thing.
It is not fun to be stuck home or in bed all day. I feel bored and trapped. I am dependent on others for everything. I feel useless and hopeless. I would give anything to go back to work.
I love being invited to places but when I decline be understanding that the effort it takes for me to get ready to go anywhere is enough to send me back to bed.
I get so tired after a certain amount of physical activity. I do not get to determine the amount. And I also do not know the amount until moments before.
I’m not lazy. I wish every day of my life to return to 2021-2022 before my body gave up on me. To be able to him the gym in the morning for an hour, work for 8 hours, cook a meal, and go to therapy all in 1 day. But I just…can’t. After a day my muscles are jello and I feel so weak and any amount of physical effort has me panting and my heart racing. I’m so tired.
I can’t do that physical thing you want me to do. I wish I could, but I can’t. I know it seems basic, but I really, really can’t. My body won’t let me. If I try, then tomorrow I literally won’t be able to get out of bed. I’m not being lazy or a party-pooper. I CAN’T.
The constant fatigue, no matter how much sleep you get or don’t get it doesn’t matter. You constantly feel like you worked a 12 hour day in the sun on 30 minutes of sleep. It just never goes away, regular tasks take so much energy that you don’t even have.
Managing energy and output is a thing. I might have the energy to do something and still say no because I need that energy for later. Or I know if I do that thing or activity, it could wipe me out making me feel awful and exhausted. Sometimes I never know and I’m not always willing to take that chance.
When you ask me how I am, I lie to protect your feelings.
I don’t want pity.
Each day is different. Sometimes I need a cane. Sometimes I need braces. Some days I don’t need aids.
“You’re too young for that problem” is not the encouragement you think it is. It’s dismissive, interpreted as a disbelief of my experience. And for the love of god don’t mention “Wait till you’re my age!” Because those are literally the thoughts that keep me up at night if I let them because I already feel your age. Pain and suffering isn’t a competition.
And, more softly, it’s okay to vent to me about your pain/struggles, too. It doesn’t matter who has it “worse”. We all struggle and we all need support.
Lastly….do not confront people who have placards or show them hate, even if they look young and healthy. So many disabilities are invisible and someone already struggling can be one step away from a breakdown. Don’t let your self righteous gate keeping spiral someone who is already probably battling their own internalized ableism of “not being disabled enough”, even though every step is pain.
Edited to add: Thank you for this question 🫂
We often feel invisible and sidelined. The biggest compliment to us is seeking to understand our experience. Thank you for seeing and considering us.
When I get short or irritated, sometimes outright mean, it’s not about you or anything you did. I’m in pain or haven’t slept more than 4 hours, sometimes less. I’m frustrated that yesterday i was on top of the world and today I can barely get out of bed and I have no idea when I’ll feel better again. At one point a muscle in my thigh spasmed for 2 years straight without anything that could help until I finally was taken seriously and given a high dose of muscle relaxers. That’s probably the worst part though, being born with spina bifida and still not taken seriously and sometimes outright told by a doctor they think I’m exaggerating, lying, or begging for attention. I don’t want to take all these meds. I don’t want to be in the hospital every few months. I don’t want to be in bed all day. I don’t want to be grouchy especially to a child that needs me, yet she seems to understand better than any adult could.
“Exercise more” isn’t going to help me feel better in any way, shape, or form. (I gained over 100lbs when I first got sick / throughout my treatments. Everyone treated me like I was lazy.)
It’s not that I don’t want to work, it’s just that for 13 hours of the day, I am alone flaring up. It’s not that I am not doing anything with my life, I am. I am breathing and trust me asthma makes that aspect so unnecessarily hard.
They are so many, just because I accepted that I am ill and working on it, doesn’t mean I let chronic illness control me. It just does and I am trying to help myself the best I could.
I have CRPS which is a chronic nerve pain disorder and I wish people understood the absolute agony it causes both in pain but in the loss you have in your daily life. I can no longer just get up and do the normal things I used to do without grabbing for my crutches. I can’t walk and hold anything, I tire easily both from the crutches and being in constant pain, the rest of my body is now starting to ache and have issues because it’s compensating for the bum leg. It’s just depressing and there’s no cure so it’s for the most part a life long struggle. Customers at work are constantly asking what’s happened and that they can’t believe I’m still on the crutches. There’s always someone out there who’s got it way worse than me so I’m always reminding myself to be grateful for that but it does get to me at times
My best friend accepts my conditions for what they are and how they effect me. His girlfriend however thinks it’s unfair that she has to work Monday through Friday and I don’t, and treats me with contempt because of it.
I wish she’d fall off her high horse and treat me with kindness and respect I show her.
Yes the weather really actually does affect how well my joints work. Atmospheric pressure is a very real thing and I’m not making up being unable to leave my bed just because it may be sunny now. A thunderstorm/tornado/rain/etc WILL be coming in and I’m absolutely fucked until the weather passes
I never know how functional my body will be when I wake up. And it’s usually dependent on what I did a day or 2 prior. I put on a smile because I hate the attention, know I’m screaming inside.
That you’re often exhausted & you don’t always know how you will be feeling. I simply set boundaries & when I am available I am present. I ask people to give me some notice & they know not to randomly drop by (unless it’s family).
Hidradenitis Suppurtiva sufferer. It hurts and I’m exhausted mentally and physically. I may be “fine” right now, but I might not be later. It’s embarrassing and I sometimes don’t feel human.
If I’m falling asleep mid sentence, I’m not being intentionally rude. I’m not trying to sleep. My body literally cannot stay awake in that moment. My “alert and full of energy” is your “kind of a low energy day.” Sleeping 12 hours is not me sleeping in. It’s me getting the bare minimum rest I need to do things like work.
That every single day is different. And very “normal” things for you can be completely draining for me. I don’t have the same battery that you do and tend to run into energetic walls that come out of nowhere. It’s more than “just getting tired” it’s a complete fault in my system. I process my surroundings differently than you do and am constantly trying to find a balance between living in the world that’s built for us and living in the body I was assigned to.
I’m not lazy. Doing even the bare minimum just to get by is fucking exhausting. Sometimes, I have to put something off for another time because I just don’t have the energy to complete it.
Constantly telling me “I hope you feel better soon” “get well soon” “it will pass” etc, is actually really hurtful. I will never be better, and it will never pass. This is my life. And being reminded of the fact I will always be sick is excruciatingly painful
how difficult it is for me to turn around multiple times bc it makes me insanely mf dizzy and can lead to fainting episodes, and just how close i am to a seizure everytime a light flashes when i dont expect/prepare for it
On high pain days I’m exhausted and just fall asleep. Just pass out whenever, wherever when it reaches that threshold.
It’s reached the point that I’m so used to the fatigue the illness brings that on good days I have insomnia.
Just, the level of tired I reach naturally doesn’t get close to the all encompassing exhaustion the pain brings – so I can’t sleep. Gotta take some dyphenhydramine to knock myself out.
I went to a sleep specialist and he said ‘pain keeps you awake, it doesn’t put you to sleep. You aren’t special.’ fucking dumbass.
So my sleep schedule is a disaster based on when I pass out and when I wake up.
We can do everything right – eat well, do yoga, not drink alcohol, get a full night’s sleep, etc. – and we will STILL have chronic illness. And it can happen to anyone at any time. Healthy people like to think that they won’t ever get a serious illness as long as they take care of themselves. And they want to blame us and tell us “you just need to try acupuncture.” Believe me, we’ve tried everything we can to get better. If it’s not illegal or cost-prohibitive, we’ve tried it.
OK… What do you want your doctors to know?? because with the ever-changing nature of day-to-day life how can I best help all of you???? I know this is not an easy question to answer if I get any responses at all. Also please an innocent question I am in training and don’t roast me…
How positively debilitating chronic pain is and what life is like with extreme fatigue. I used to be able to out-work my boys when they were teens and early 20s but today I got only one physical thing done today and am shot. I loved to go hiking and backpacking and could do miles on a fireline. Now I’m exhausted just walking a few hundred feet to feed and care for my crew, that I have to take several breaks while doing…
The hypervigilant, constant internal/external monitoring of symptoms is necessary, but corrosive to the spirit.
It’s like a muscle. That muscle gets stronger and more efficient by its repeated use, which is protective against my immune system trying to murder me. But overuse erodes mental health. And never being able to unclench that muscle fully without ending up in the hospital is exhausting.
The gray zone is hell. Not every spinal cord injury is complete, and not all of us are paralyzed or incapable of walking. My good days don’t undo or invalidate my bad days. Me having kind of a “spitfire” personality doesn’t undo my injury; that’s just my ptsd. I turned into a cynic, and I know it. Spinal cord damage doesn’t heal very much. I’m as lucky to be mobile as I am unlucky to be injured.
I can’t predict my body from one minute to the next. But I’ll never stop doing things when it allows me to. And lastly, like many chronic illnesses, those of us with sci’s live with it until we die.
My colon sucks. When it works, it works. When it doesn’t, life is miserable. Doesn’t matter what i eat, drink, if I’m facing north during a lunar eclipse or if I rub patchouli oil on my left big toe. It does what it wants and it hurts like hell.
I’m probably experiencing a debilitating or distressing symptom right now, you just can’t tell.
It takes an extraordinary amount of resilience to keep going.
I don’t need you to understand, I just need you to stand by me while I tackle it – sometimes a cup of tea and hug is honestly helpful.
No, I can’t just stop overthinking and things will magically be better.
There is no quick fix.
I know my situation better than you do so don’t patronise me and act like you know best.
Please don’t invalidate my struggle by telling me it’s easy, I just need to be positive, there are people worse off – maybe I need the acknowledgement of the struggle and pain I face.
If you have an inkling that someone is going through a hard time, maybe stop reporting them to management because they aren’t performing at 100% and offer a bit of support instead (obviously sometimes it might be necessary, but if they aren’t making errors and they are just being slow then maybe just speak to the individual first instead of jumping straight to a complaint…).
Just because I look okay and move around alright, it doesn’t mean much. Nothing like having to hype yourself up and do stretches just so you can walk to the toilet without acting like you are in too much pain
No, my diet/lifestyle change isn’t a thing I did just to lose weight. No, I don’t have cheat days. No, I can’t just go wherever I want to eat. It has to be expertly calculated.
Yes, it’s serious.
Please stop inviting me to things you know I can’t do. I know you don’t want me to feel left out of the group activities, but also inviting me to strenuous physical events that you know I can’t partake in feels really mean. I have to keep turning you down and I feel almost like it’s thrown in my face that my body is keeping me from participating/hanging out. I don’t want to alienate people by constantly saying turning them down, but why do they keep offering events they know I cant go to???
I’m fatigued, sore and dry – every day is metering out the energy I have so that the next day I’m not wiped out; it’s putting drops in my eyes, spay up my nose and cream on my hands/body; it’s taking pills to ease pain.
No, I don’t talk about it all the time – it’s boring. Who wants to listen to that every day. It doesn’t mean it’s not there though.
I don’t need someone to diagnose me. I know what’s wrong. I’ve discussed my issues endlessly with doctors, and I don’t need a miracle crystal or oil to cure me. I appreciate the thought, though.
That you can do everything right to protect your health, you can have good genes and you can still end up will a debilitating chronic illness that you can’t get rid, of no matter how hard you try. No matter what you do there’s no going back to the life you had before.
The fatigue from an autoimmune disorder, or any other chronic illness I’m betting, is no joke. When I say I’m tired, I don’t mean “I feel sleepy/low energy.” I mean I’m experiencing dizziness, rubbery legs, lack of coordination and balance, full-body aches and can’t focus my vision.
Coffee doesn’t help. Will power is irrelevant. How much I care or don’t care about the matter at hand is irrelevant.
“Just try harder,” “We all get tired,” and “How can you be tired? It’s not like you have kids/have too much being asked of you/worked out” are all extremely ignorant and counterproductive things to say.
As a diabetic (type 1) and ADHD person, the small thing that is ignored and bigger than you think is the feeling of uselessness when you can’t perform as well as your colleagues because of your condition. You feel guilty for taking a morning off for a high blood sugar and you wonder if you will ever get a vacation in the US or god forbid fired for “not being a team player” or “not a cultural fit” or other made up BS.
That I might look like I’m functioning great during the 2 hours you saw me today. But i only spent a grand total of 3 hours out of bed today. The rest of the time I was too exhausted to sit upright.
I wish people would stop downplaying the severity of functionality when it comes to chronic illness. Just because I don’t always “look sick” doesn’t mean I’m not disabled still. I still struggle a lot. That doesn’t make me or anyone with that lazy either.
Yes, this depends on your country and health care system, but largely, even with universal healthcare (and if you are fortunate enough to have extended benefits), there are so many unexpected or additional costs that come up that loved ones or friends just don’t seem to need to account for.
Beyond the obvious expenses, all the little things add up… like transportation to appointments (and the time off work if you are able to work) or a bottle of water if you get caught unexpectedly during a flare.
Also, it requires so much preparation and planning for things like appointments and unexpected flare-ups. I have so many little things in my bag that I bring out when I leave the house just in case, but there’s honestly never a way we can prepare for everything – we just do our best.
My husband has had chronic pain for the last 15 yrs, from his neck all the way to his knees. Fortunately, all of our friends know he’s in pain 24/7. On top of what he already has, he was diagnosed with esophageal cancer, stage 3.
That when you say to me “must be nice to not have to work” – I mean it when I tell you I’d switch places in a heartbeat.
No, it’s not nice. I can’t do most things others can. making a 1/2 batch of cookies knocks me on my ass for a day.
doing anything that involves leaving the house means I’ll be in pain for at least 2 days, and not feel rested the entire time.
it’s not fun. it’s not convenient. it drives me fucking insane and the sad part is – there is NOTHING I can do about it but go with the flow. and hope I don’t injure myself when I collapse in a drop attack.
A migraine is not a bad headache. A bad headache can be a symptom, but the actual condition is entirely neurological and involves sooooo much more and no, we can’t cure it with a glass of water.
I didn’t ‘earn’ or ‘deserve’ my illness. I was perfectly healthy until I hit puberty and my genetic diseases kicked in. I remember what it’s like to be that healthy so no, I’m not faking the flareup that’s coming from me doing one more chore than usual. I know to a healthy person that wouldn’t make any difference, but I might be put in the Agony Vortex for two days as my body punishes me
I do not have the same time as you . I live like I’m moving underwater. It’s hard. It takes more time and more energy.
I make my entire day, everyday, about surviving with the least amount of push back from my body. This means it takes an hour to clear my bladder .It takes 3 separate hours of physical therapy a day, a shower needs a helper, my meal prep is exhausting, because I can’t eat anything premade.
Going in public alone is dangerous. Driving is dangerous. Taking a walk is dangerous
I can’t be hot, and cold feels like some kind of torture.
There is not a single moment in my life I will not be in pain. It does not go away. I ignore it to the best of my ability. When that doesn’t work I use everything but pills, until they are the only thing the gives relief. Even then , I just have to wait it out.
I want to eat all the lovely things you make . I can not. Will not. It isn’t worth the risk. I am barely able to feed myself. It’s not about you. It’s about my body’s inability to properly absorb it. And the pain that comes from eating anything I’m specifically not allowed to. Pain that can throw me into a full flair for months.
Stress is as bad as eating bad food. It compounds the symptoms. And makes everything more painful.
I want to get up and do things. I will never be able to. I will never be able to survive on my own. I haven’t worked long enough for social security to make a dent in my bills.
If there’s is a breakdown in the medicine line, I will die.
I struggle deeply with the resentment it brings.
I don’t know what caused it. They didn’t research it well yet.
A large part of my illness is unseen and very hard to live with. If I tell you I can’t do something, it quite literally means I’m physically unable. It has nothing to do with laziness.
Narcolepsy is not when you randomly fall asleep. People who have narcolepsy experiences excessive daytime sleepiness, that isn’t fatigue, it’s what it feels like being awake for 48-72 hours.
The falling down is an inaccurate depiction of cataplexy (sudden loss of muscle tone usually from strong emotions). They’re conscious when this happens not asleep.
It’s life altering and can be debilitating. There’s no cure and no adequate treatment
Edit: Imagine never getting a good night’s rest for the rest of your life. Not just for a week, a month, or year, but forever
Just because I look ‘fine’ doesn’t mean I’m not sick. I’ve been struggling with Endo so much and I’m currently on morphine. When people see me they say I look ok and I am so angry because you don’t know what I’m going through.
I can barely walk and function so the time I’m out I cherish it.
Just because I was able to do something one time doesn’t mean I can do it today. And probably last time I pushed myself too far and paid the price for it. Sure I seem fine to lift the heavy thing or be on my feet all day. I will be in bed all day tomorrow though. I’m not being lazy by saying I can’t do the thing; I’m trying to protect myself from an injury or flare up which could last weeks.
That constantly suggesting solutions, fixes, cures etc, and talking about how and when you’ll “get better” is so painful. It makes you feel pressure to push yourself towards a state of wellness or fitness that might not be possible, and it makes you feel like they don’t accept your disabled self.
I have T1D. Most of the time is quite manageable. Sometimes at 2AM I’ll try to invent new swear words out of frustration. And yes, I have a completely normal diet.
I don’t take all these medications for fun. I take them for a baseline that cuts off the top peaks and gives me a constant level of pain that’s manageable.
I don’t take opiates for fun, I take them because everytime I get a flare, my insides try becoming outsides and I really don’t like crying in pain whilst shitting myself dry on 6 hours of sleep in 3 days.
I’m not lazy, just too much mental or physical stimulation wears me out and I have to rest or I drop.
In my experience most poeples understand all the points that are mentioned in this thread, it is just incredibly hard for them to put themselves in the shoes of someone with chronic pain without having experienced it. And I genuinely hope they never have to.
But for the curious, or the ones with a closed one that suffer, instead of suggesting tips you saw here and there, start by openning reddit, type the name of the illness and start reading through the dedicated sub.
Read the shared experiences, the sources that are linked and so on. Poeples on these subs talk about their pain, the things they have tried, the one that worked, the side effects, the things they are anxious about, the frustration of not being listen to by they care provider.
It will probably open a window on something your loved one my not be willing to share (or not entirely) by fear of burdenning you.
(and If you suffer chronic illness, same advice 😊)
Your perception of my illness is inherently flawed, because the only moments you see me, are those I’m pushing past my boundaries. Otherwise you wouldn’t see me at all. That doesn’t mean I’ll always on every whim do that. I will chose my own health over your pleasure or convenience, and that’s not because I’m a bitch, but because I do need to be able to live and breath and tolerate light
I might be fine for the moment but something small can change that pretty easily. Like, that quick spray of perfume you did this morning or that air freshener in your car has the potential to ruin the rest of my day or even my whole week. Things the average person doesn’t think twice about are risky to my wellbeing. I’m not trying to inconvenience you.
Comments
If I’m being short with my replies while having a face to face conversation, it’s not because I don’t want to be having the conversation. I’d say that if it was the case. It’s because talking for too long hurts my vocal chords.
That yes today I am getting around great and you saw me this way and then you think I am lying next time because I can’t do stuff. It is a day by day thing.
The amount of medication I would have to take to be truly pain-free is not compatible with life .
Chronic illness isn’t visible. I may look fine but still struggle. It’s not laziness. Acknowledgment helps.
Pain.
It is not fun to be stuck home or in bed all day. I feel bored and trapped. I am dependent on others for everything. I feel useless and hopeless. I would give anything to go back to work.
I love being invited to places but when I decline be understanding that the effort it takes for me to get ready to go anywhere is enough to send me back to bed.
Everything fucking sucks. Always.
People don’t seem to realize this because mine isn’t visible. So they just assume I have something on the level of a cold.
Also the fact that staying home constantly is NOT a fun or good thing.
Nor are painkillers magic. I’m still in pain, just a little less.
I get so tired after a certain amount of physical activity. I do not get to determine the amount. And I also do not know the amount until moments before.
I’m not lazy. I wish every day of my life to return to 2021-2022 before my body gave up on me. To be able to him the gym in the morning for an hour, work for 8 hours, cook a meal, and go to therapy all in 1 day. But I just…can’t. After a day my muscles are jello and I feel so weak and any amount of physical effort has me panting and my heart racing. I’m so tired.
That you really don’t know what it’s like to be me so instead of getting mad at me maybe ask if there’s something that would make things easier
I get exhausted.
That I have exhausted every medical resource beyond measure and asking if I’ve tried turmeric or peppermint oil is belittling and insulting.
I have lost count of how many doctors and medical professionals I’ve seen for my illness. Keep your TikTok education to yourself.
I can’t do that physical thing you want me to do. I wish I could, but I can’t. I know it seems basic, but I really, really can’t. My body won’t let me. If I try, then tomorrow I literally won’t be able to get out of bed. I’m not being lazy or a party-pooper. I CAN’T.
The constant fatigue, no matter how much sleep you get or don’t get it doesn’t matter. You constantly feel like you worked a 12 hour day in the sun on 30 minutes of sleep. It just never goes away, regular tasks take so much energy that you don’t even have.
Managing energy and output is a thing. I might have the energy to do something and still say no because I need that energy for later. Or I know if I do that thing or activity, it could wipe me out making me feel awful and exhausted. Sometimes I never know and I’m not always willing to take that chance.
All chronic illnesses are not visible
That I wake up an the first thing my brain tells me is pain
Just because I’m not complaining about symptoms doesn’t mean I’m not currently experiencing them.
Managing it is a full time job.
When you ask me how I am, I lie to protect your feelings.
I don’t want pity.
Each day is different. Sometimes I need a cane. Sometimes I need braces. Some days I don’t need aids.
“You’re too young for that problem” is not the encouragement you think it is. It’s dismissive, interpreted as a disbelief of my experience. And for the love of god don’t mention “Wait till you’re my age!” Because those are literally the thoughts that keep me up at night if I let them because I already feel your age. Pain and suffering isn’t a competition.
And, more softly, it’s okay to vent to me about your pain/struggles, too. It doesn’t matter who has it “worse”. We all struggle and we all need support.
Lastly….do not confront people who have placards or show them hate, even if they look young and healthy. So many disabilities are invisible and someone already struggling can be one step away from a breakdown. Don’t let your self righteous gate keeping spiral someone who is already probably battling their own internalized ableism of “not being disabled enough”, even though every step is pain.
Edited to add: Thank you for this question 🫂
We often feel invisible and sidelined. The biggest compliment to us is seeking to understand our experience. Thank you for seeing and considering us.
Just how hard it is to get out of bed
When I get short or irritated, sometimes outright mean, it’s not about you or anything you did. I’m in pain or haven’t slept more than 4 hours, sometimes less. I’m frustrated that yesterday i was on top of the world and today I can barely get out of bed and I have no idea when I’ll feel better again. At one point a muscle in my thigh spasmed for 2 years straight without anything that could help until I finally was taken seriously and given a high dose of muscle relaxers. That’s probably the worst part though, being born with spina bifida and still not taken seriously and sometimes outright told by a doctor they think I’m exaggerating, lying, or begging for attention. I don’t want to take all these meds. I don’t want to be in the hospital every few months. I don’t want to be in bed all day. I don’t want to be grouchy especially to a child that needs me, yet she seems to understand better than any adult could.
Knowing this is how my life is going to be forever is almost as bad as the illness. There’s nothing in life to look forward to.
“Exercise more” isn’t going to help me feel better in any way, shape, or form. (I gained over 100lbs when I first got sick / throughout my treatments. Everyone treated me like I was lazy.)
When I get cranky or am just worn out or want to be left alone that it’s not them, it’s my illness having it’s effects on me
It’s not that I don’t want to work, it’s just that for 13 hours of the day, I am alone flaring up. It’s not that I am not doing anything with my life, I am. I am breathing and trust me asthma makes that aspect so unnecessarily hard.
They are so many, just because I accepted that I am ill and working on it, doesn’t mean I let chronic illness control me. It just does and I am trying to help myself the best I could.
I have CRPS which is a chronic nerve pain disorder and I wish people understood the absolute agony it causes both in pain but in the loss you have in your daily life. I can no longer just get up and do the normal things I used to do without grabbing for my crutches. I can’t walk and hold anything, I tire easily both from the crutches and being in constant pain, the rest of my body is now starting to ache and have issues because it’s compensating for the bum leg. It’s just depressing and there’s no cure so it’s for the most part a life long struggle. Customers at work are constantly asking what’s happened and that they can’t believe I’m still on the crutches. There’s always someone out there who’s got it way worse than me so I’m always reminding myself to be grateful for that but it does get to me at times
My best friend accepts my conditions for what they are and how they effect me. His girlfriend however thinks it’s unfair that she has to work Monday through Friday and I don’t, and treats me with contempt because of it.
I wish she’d fall off her high horse and treat me with kindness and respect I show her.
Every diet/insulin management decision I make (and I make many per day) is a life-or-death decision. It is exhausting and I am always scared.
We can’t override biology.
Efforting even more will work against us in the long run by borrowing from tomorrow to give to this moment and paying interest.
Yes the weather really actually does affect how well my joints work. Atmospheric pressure is a very real thing and I’m not making up being unable to leave my bed just because it may be sunny now. A thunderstorm/tornado/rain/etc WILL be coming in and I’m absolutely fucked until the weather passes
I never know how functional my body will be when I wake up. And it’s usually dependent on what I did a day or 2 prior. I put on a smile because I hate the attention, know I’m screaming inside.
I don’t cancel plans because I’m a flake. I cancel plans because I don’t get to pick and choose when I’m having a bad day or a flare up.
That you’re often exhausted & you don’t always know how you will be feeling. I simply set boundaries & when I am available I am present. I ask people to give me some notice & they know not to randomly drop by (unless it’s family).
Just because my chronic illnesses are in my brain does not mean it’s any less of an ailment.
Hidradenitis Suppurtiva sufferer. It hurts and I’m exhausted mentally and physically. I may be “fine” right now, but I might not be later. It’s embarrassing and I sometimes don’t feel human.
If I’m falling asleep mid sentence, I’m not being intentionally rude. I’m not trying to sleep. My body literally cannot stay awake in that moment. My “alert and full of energy” is your “kind of a low energy day.” Sleeping 12 hours is not me sleeping in. It’s me getting the bare minimum rest I need to do things like work.
I’m not pretending to be sick. I’m pretending to be well.
Just because I’m mobile doesn’t mean I’m ok
That every single day is different. And very “normal” things for you can be completely draining for me. I don’t have the same battery that you do and tend to run into energetic walls that come out of nowhere. It’s more than “just getting tired” it’s a complete fault in my system. I process my surroundings differently than you do and am constantly trying to find a balance between living in the world that’s built for us and living in the body I was assigned to.
I am doing everything I am medically advised to that I can. I don’t want or need your ‘helpful suggestions’ on fixing myself.
I’m not lazy. Doing even the bare minimum just to get by is fucking exhausting. Sometimes, I have to put something off for another time because I just don’t have the energy to complete it.
Just because I’m functioning doesn’t mean I’m OK.
I’m never not in some kind of pain. So when I say I’m in pain, I’m in PAIN. My 5/10 pain is your 10/10 pain.
I’m always exhausted. Some days I might be able to push through it better than others.
Constantly telling me “I hope you feel better soon” “get well soon” “it will pass” etc, is actually really hurtful. I will never be better, and it will never pass. This is my life. And being reminded of the fact I will always be sick is excruciatingly painful
You’re only temporarily able bodied – enjoy it like it could all go poof tomorrow. Sooner or later we all become disabled.
how difficult it is for me to turn around multiple times bc it makes me insanely mf dizzy and can lead to fainting episodes, and just how close i am to a seizure everytime a light flashes when i dont expect/prepare for it
Getting out of bed is hard. The fact that I showed up to work is already a great accomplishment.
On high pain days I’m exhausted and just fall asleep. Just pass out whenever, wherever when it reaches that threshold.
It’s reached the point that I’m so used to the fatigue the illness brings that on good days I have insomnia.
Just, the level of tired I reach naturally doesn’t get close to the all encompassing exhaustion the pain brings – so I can’t sleep. Gotta take some dyphenhydramine to knock myself out.
I went to a sleep specialist and he said ‘pain keeps you awake, it doesn’t put you to sleep. You aren’t special.’ fucking dumbass.
So my sleep schedule is a disaster based on when I pass out and when I wake up.
We can do everything right – eat well, do yoga, not drink alcohol, get a full night’s sleep, etc. – and we will STILL have chronic illness. And it can happen to anyone at any time. Healthy people like to think that they won’t ever get a serious illness as long as they take care of themselves. And they want to blame us and tell us “you just need to try acupuncture.” Believe me, we’ve tried everything we can to get better. If it’s not illegal or cost-prohibitive, we’ve tried it.
OK… What do you want your doctors to know?? because with the ever-changing nature of day-to-day life how can I best help all of you???? I know this is not an easy question to answer if I get any responses at all. Also please an innocent question I am in training and don’t roast me…
The constant pain.
My internal energy reserves are WAY smaller than the average bear’s, and when I’m out of energy, I’m OUT.
No, I’m not being lazy. No, I’m not slacking off. My need to recharge is just far more important to me than whatever your problem is.
How positively debilitating chronic pain is and what life is like with extreme fatigue. I used to be able to out-work my boys when they were teens and early 20s but today I got only one physical thing done today and am shot. I loved to go hiking and backpacking and could do miles on a fireline. Now I’m exhausted just walking a few hundred feet to feed and care for my crew, that I have to take several breaks while doing…
I’m really not just making this stuff up.
The hypervigilant, constant internal/external monitoring of symptoms is necessary, but corrosive to the spirit.
It’s like a muscle. That muscle gets stronger and more efficient by its repeated use, which is protective against my immune system trying to murder me. But overuse erodes mental health. And never being able to unclench that muscle fully without ending up in the hospital is exhausting.
The gray zone is hell. Not every spinal cord injury is complete, and not all of us are paralyzed or incapable of walking. My good days don’t undo or invalidate my bad days. Me having kind of a “spitfire” personality doesn’t undo my injury; that’s just my ptsd. I turned into a cynic, and I know it. Spinal cord damage doesn’t heal very much. I’m as lucky to be mobile as I am unlucky to be injured.
I can’t predict my body from one minute to the next. But I’ll never stop doing things when it allows me to. And lastly, like many chronic illnesses, those of us with sci’s live with it until we die.
Thank you OP.
My colon sucks. When it works, it works. When it doesn’t, life is miserable. Doesn’t matter what i eat, drink, if I’m facing north during a lunar eclipse or if I rub patchouli oil on my left big toe. It does what it wants and it hurts like hell.
The tiredness. I am exhausted every single day and trying to explain that to someone who doesn’t understand it is impossible.
That I want to die? Ya probably that.
You know when you have the stomach bug or a flue? I feel like this everyday.
It’s hard. I’m tired. Everything hurts.
(Both physical and mental illness):
I’m probably experiencing a debilitating or distressing symptom right now, you just can’t tell.
It takes an extraordinary amount of resilience to keep going.
I don’t need you to understand, I just need you to stand by me while I tackle it – sometimes a cup of tea and hug is honestly helpful.
No, I can’t just stop overthinking and things will magically be better.
There is no quick fix.
I know my situation better than you do so don’t patronise me and act like you know best.
Please don’t invalidate my struggle by telling me it’s easy, I just need to be positive, there are people worse off – maybe I need the acknowledgement of the struggle and pain I face.
If you have an inkling that someone is going through a hard time, maybe stop reporting them to management because they aren’t performing at 100% and offer a bit of support instead (obviously sometimes it might be necessary, but if they aren’t making errors and they are just being slow then maybe just speak to the individual first instead of jumping straight to a complaint…).
Just because I look okay and move around alright, it doesn’t mean much. Nothing like having to hype yourself up and do stretches just so you can walk to the toilet without acting like you are in too much pain
No, my diet/lifestyle change isn’t a thing I did just to lose weight. No, I don’t have cheat days. No, I can’t just go wherever I want to eat. It has to be expertly calculated.
Yes, it’s serious.
Please stop inviting me to things you know I can’t do. I know you don’t want me to feel left out of the group activities, but also inviting me to strenuous physical events that you know I can’t partake in feels really mean. I have to keep turning you down and I feel almost like it’s thrown in my face that my body is keeping me from participating/hanging out. I don’t want to alienate people by constantly saying turning them down, but why do they keep offering events they know I cant go to???
We hide it the best we can, but some things take more energy for us to do
I’m fatigued, sore and dry – every day is metering out the energy I have so that the next day I’m not wiped out; it’s putting drops in my eyes, spay up my nose and cream on my hands/body; it’s taking pills to ease pain.
No, I don’t talk about it all the time – it’s boring. Who wants to listen to that every day. It doesn’t mean it’s not there though.
I’m in pain all the time and will be until I die.
I don’t need someone to diagnose me. I know what’s wrong. I’ve discussed my issues endlessly with doctors, and I don’t need a miracle crystal or oil to cure me. I appreciate the thought, though.
That you can do everything right to protect your health, you can have good genes and you can still end up will a debilitating chronic illness that you can’t get rid, of no matter how hard you try. No matter what you do there’s no going back to the life you had before.
Just because I’m not wincing and groaning constantly in pain, doesn’t mean I’m not in pain.
I’m not lazy, it just takes way more energy and effort to function at a normal person’s level.
The fatigue from an autoimmune disorder, or any other chronic illness I’m betting, is no joke. When I say I’m tired, I don’t mean “I feel sleepy/low energy.” I mean I’m experiencing dizziness, rubbery legs, lack of coordination and balance, full-body aches and can’t focus my vision.
Coffee doesn’t help. Will power is irrelevant. How much I care or don’t care about the matter at hand is irrelevant.
“Just try harder,” “We all get tired,” and “How can you be tired? It’s not like you have kids/have too much being asked of you/worked out” are all extremely ignorant and counterproductive things to say.
All these pills may not cure me, but without them I will die a slow and even more painful death. You’re seeing the “me” that medication can provide.
As a diabetic (type 1) and ADHD person, the small thing that is ignored and bigger than you think is the feeling of uselessness when you can’t perform as well as your colleagues because of your condition. You feel guilty for taking a morning off for a high blood sugar and you wonder if you will ever get a vacation in the US or god forbid fired for “not being a team player” or “not a cultural fit” or other made up BS.
That I might look like I’m functioning great during the 2 hours you saw me today. But i only spent a grand total of 3 hours out of bed today. The rest of the time I was too exhausted to sit upright.
Just how fucking exhausted I am. All the time. Pain wipes me out.
I wish people would stop downplaying the severity of functionality when it comes to chronic illness. Just because I don’t always “look sick” doesn’t mean I’m not disabled still. I still struggle a lot. That doesn’t make me or anyone with that lazy either.
If I told you every time I was experiencing a symptom, I’d never shut up.
It is expensive.
Yes, this depends on your country and health care system, but largely, even with universal healthcare (and if you are fortunate enough to have extended benefits), there are so many unexpected or additional costs that come up that loved ones or friends just don’t seem to need to account for.
Beyond the obvious expenses, all the little things add up… like transportation to appointments (and the time off work if you are able to work) or a bottle of water if you get caught unexpectedly during a flare.
Also, it requires so much preparation and planning for things like appointments and unexpected flare-ups. I have so many little things in my bag that I bring out when I leave the house just in case, but there’s honestly never a way we can prepare for everything – we just do our best.
Just because I’m smiling and laughing doesn’t mean I’m faking my illness. I’m smiling and laughing, because I don’t want to be miserable.
My husband has had chronic pain for the last 15 yrs, from his neck all the way to his knees. Fortunately, all of our friends know he’s in pain 24/7. On top of what he already has, he was diagnosed with esophageal cancer, stage 3.
That when you say to me “must be nice to not have to work” – I mean it when I tell you I’d switch places in a heartbeat.
No, it’s not nice. I can’t do most things others can. making a 1/2 batch of cookies knocks me on my ass for a day.
doing anything that involves leaving the house means I’ll be in pain for at least 2 days, and not feel rested the entire time.
it’s not fun. it’s not convenient. it drives me fucking insane and the sad part is – there is NOTHING I can do about it but go with the flow. and hope I don’t injure myself when I collapse in a drop attack.
Good health is a crown on the head of a well person that only a sick person can see
A migraine is not a bad headache. A bad headache can be a symptom, but the actual condition is entirely neurological and involves sooooo much more and no, we can’t cure it with a glass of water.
I didn’t ‘earn’ or ‘deserve’ my illness. I was perfectly healthy until I hit puberty and my genetic diseases kicked in. I remember what it’s like to be that healthy so no, I’m not faking the flareup that’s coming from me doing one more chore than usual. I know to a healthy person that wouldn’t make any difference, but I might be put in the Agony Vortex for two days as my body punishes me
That I can’t do something at the drop of a hat. And no exercise does not help.
I can die at any moment, and I’ve accepted that. Not by choice, but by circumstance.
If my chronic illness is inconveniencing you, try to imagine what it’s like for ME.
We’re not making it up.
And that what will kill me is not actually my chronic illness. It’s society’s reaction to my chronic illness.
I do not have the same time as you . I live like I’m moving underwater. It’s hard. It takes more time and more energy.
I make my entire day, everyday, about surviving with the least amount of push back from my body. This means it takes an hour to clear my bladder .It takes 3 separate hours of physical therapy a day, a shower needs a helper, my meal prep is exhausting, because I can’t eat anything premade.
Going in public alone is dangerous. Driving is dangerous. Taking a walk is dangerous
I can’t be hot, and cold feels like some kind of torture.
There is not a single moment in my life I will not be in pain. It does not go away. I ignore it to the best of my ability. When that doesn’t work I use everything but pills, until they are the only thing the gives relief. Even then , I just have to wait it out.
I want to eat all the lovely things you make . I can not. Will not. It isn’t worth the risk. I am barely able to feed myself. It’s not about you. It’s about my body’s inability to properly absorb it. And the pain that comes from eating anything I’m specifically not allowed to. Pain that can throw me into a full flair for months.
Stress is as bad as eating bad food. It compounds the symptoms. And makes everything more painful.
I want to get up and do things. I will never be able to. I will never be able to survive on my own. I haven’t worked long enough for social security to make a dent in my bills.
If there’s is a breakdown in the medicine line, I will die.
I struggle deeply with the resentment it brings.
I don’t know what caused it. They didn’t research it well yet.
A large part of my illness is unseen and very hard to live with. If I tell you I can’t do something, it quite literally means I’m physically unable. It has nothing to do with laziness.
Narcolepsy is not when you randomly fall asleep. People who have narcolepsy experiences excessive daytime sleepiness, that isn’t fatigue, it’s what it feels like being awake for 48-72 hours.
The falling down is an inaccurate depiction of cataplexy (sudden loss of muscle tone usually from strong emotions). They’re conscious when this happens not asleep.
It’s life altering and can be debilitating. There’s no cure and no adequate treatment
Edit: Imagine never getting a good night’s rest for the rest of your life. Not just for a week, a month, or year, but forever
That I can’t do everything that other ppl can do
Just because I look ‘fine’ doesn’t mean I’m not sick. I’ve been struggling with Endo so much and I’m currently on morphine. When people see me they say I look ok and I am so angry because you don’t know what I’m going through.
I can barely walk and function so the time I’m out I cherish it.
Just because I was able to do something one time doesn’t mean I can do it today. And probably last time I pushed myself too far and paid the price for it. Sure I seem fine to lift the heavy thing or be on my feet all day. I will be in bed all day tomorrow though. I’m not being lazy by saying I can’t do the thing; I’m trying to protect myself from an injury or flare up which could last weeks.
That constantly suggesting solutions, fixes, cures etc, and talking about how and when you’ll “get better” is so painful. It makes you feel pressure to push yourself towards a state of wellness or fitness that might not be possible, and it makes you feel like they don’t accept your disabled self.
Just because you can’t see it, doesn’t mean I’m ok.
I have T1D. Most of the time is quite manageable. Sometimes at 2AM I’ll try to invent new swear words out of frustration. And yes, I have a completely normal diet.
I don’t take all these medications for fun. I take them for a baseline that cuts off the top peaks and gives me a constant level of pain that’s manageable.
I don’t take opiates for fun, I take them because everytime I get a flare, my insides try becoming outsides and I really don’t like crying in pain whilst shitting myself dry on 6 hours of sleep in 3 days.
I’m not lazy, just too much mental or physical stimulation wears me out and I have to rest or I drop.
In my experience most poeples understand all the points that are mentioned in this thread, it is just incredibly hard for them to put themselves in the shoes of someone with chronic pain without having experienced it. And I genuinely hope they never have to.
But for the curious, or the ones with a closed one that suffer, instead of suggesting tips you saw here and there, start by openning reddit, type the name of the illness and start reading through the dedicated sub.
Read the shared experiences, the sources that are linked and so on. Poeples on these subs talk about their pain, the things they have tried, the one that worked, the side effects, the things they are anxious about, the frustration of not being listen to by they care provider.
It will probably open a window on something your loved one my not be willing to share (or not entirely) by fear of burdenning you.
(and If you suffer chronic illness, same advice 😊)
Your perception of my illness is inherently flawed, because the only moments you see me, are those I’m pushing past my boundaries. Otherwise you wouldn’t see me at all. That doesn’t mean I’ll always on every whim do that. I will chose my own health over your pleasure or convenience, and that’s not because I’m a bitch, but because I do need to be able to live and breath and tolerate light
I have chronic migraines.
I might be fine for the moment but something small can change that pretty easily. Like, that quick spray of perfume you did this morning or that air freshener in your car has the potential to ruin the rest of my day or even my whole week. Things the average person doesn’t think twice about are risky to my wellbeing. I’m not trying to inconvenience you.
That I’m not lying. And that I deserve social support even if you can’t see my illness all the time.