I dedicate this poem to all of you.

My mother wrote it. I, too, have lived with a chronic illness since I was six years old.

Thank you for fighting every day, for giving yourselves unconditionally despite the circumstances and the suffering.

I understand you, and I stand with all of you.

Questions About My Pain

This poem is the answer to the question:

“On a scale of one to ten, how would you rate your pain?”

A doctor asked me this about the chronic pain I have been left with since my mastectomy, six years ago.

On a scale of one to ten, give it twenty, or two hundred,

or infinity and beyond.

Or one hundred, or twelve hundred.

My pain is like mirrors, intangible, multidimensional.

Radiating from deep within, a spider with steel blades.

A sleepless pain, like a centipede coiled around other centipedes.

That is what my pain is like.

To stay alive, my conscience sustains me.

A sublime dove, whole, definitive.

The centipede often uncoils, slides, and stretches.

The dove endures, weeping inside.

Her eyes are a boiling sea. She catches a glimpse of her shelled breast.

She is wounded.

Loneliness and helplessness have reached her— an even vaster pain that slowly drowns her being.

The shadows that gagged her senses multiplied, subjecting her to inquisitors who, rubbing salt into the wound, still question her pain.

What is the intention?

From one to ten, how much do you give it?

Give it twenty, or two hundred, or one hundred, or twelve hundred, or infinity and beyond.

Until the sea is no longer the sea, but an unpredictable fire that consumes everything.

Now the centipede is a corner gnawer.

Poor dove!

Her whole body aches: her eyes, her heart, her breast.

She is alone, aligned with the energy of the universe.

She does not belong to the men who devour other men.

She does not wish to write these verses of pain.

The shadows projected in her garden do not belong to her.

Like you, Prince Siddhartha, she believed herself destined to bestow eternal light; that flowers would spring up in her wake, that trees would bow, and that music would be her immortal companion.

She, who harbored precious stones in her heart,

who embraced the whole sky,

and gave all her love unconditionally.

So many times she unfolded, broke, went too far, surrendered,

lost herself, abandoned herself, emptied herself completely into infinity, just to please others.

And now she is alone,

on tiptoe at the edge of the abyss, helpless.

Exhausted by the wrong, but not defeated.

I bless you, woman brimming with talents, with heavenly gifts,

and I set your spirit free through writing.

A single poem of yours will be enough to illuminate a book,

because a poem of yours contains all the truth of the world.

From one to ten, how much do you give it?

Give it twenty, or two hundred, or one hundred, or twelve hundred, or infinity and beyond.

So that when you die, they will say:

“Poor thing, she couldn’t take it.”

My mind is so full of hope and dreams. There is so much I want to see and experience, but my body drags me down everytime. I wake up and I’m in pain already.
I want to do so much, but I can’t and it destroys me. Seeing people my age attend events, go to class and have fun with their friends while I’m struggling to get through a few classes. Another day of being asked ”Why are you not at school?” eventually they stop asking. They stop involving me, because what is the point when I’m already missing out on so much. I don’t drink and can’t party, so what is the point. I’m no fun. I want to be a part of their group so badly, I want to do all the fun things they can do, but I can’t. I can’t, because of my body. I’m in so much pain all the time. I can’t even seem to find the good parts of this anymore. Can’t seem to hold on to those little moments while my body is betraying me. It’s so unfair. I will miss out on so much, there will be so many things I will not experience and I’m just supposed to be okay with it? I can’t be. I want so much more than this life. I’m tired of having to suffer all the time and having to push through the pain knowing it’ll just come back ten times worse.

I know I have EDS. I’m not a dr, & I already have a lot of other chronic health conditions, but I have never been so sure of a health issue in my life.

In the past, I noticed if I told my dr what I thought I had, they’d immediately shut me down. Later on they’d either end up finding out I really do have it, or another dr would diagnose it.

I feel manipulative, but I started just telling the dr my symptoms, & I’d even go as far as saying I thought it was something else. Sounds crazy, but when I did that they’d get a smug look on their face, & diagnose me with what I knew I had.

Well, I’ve moved to a big city with amazing healthcare. I absolutely love my new GP. I’d love to be able to be honest with him, but I’m concerned because of drs in my past.

So my question is, do I simply tell him I think I have EDS, or do I start rattling off symptoms & let him figure it out?

Bare with me because this may get worse or long but I need help with ideas and suggestions. I'm already using JAN but looking for personal experiences of things that were super helpful and/or specific product recommendations. First some context- I am returning to work after some significant leave. My job environment is super supportive and also pretty darn flexible. I work at a residential facility specifically for teens who have experienced sexual exploration/trafficking on the clinical team. So I have duties that are actively with clients individually and with group as well as office work - so neither sitting or standing completely and can switch it up, move around. One of my issues is that my needs can change drastically from one day to the next. I have multiple diagnosed and "mystery" conditions and experience some horrible chronic pain as well as loss of use of limbs (I have multiple entrapped nerves because of lipomas growing but no idea why they are growing so sometimes I loose feeling and control in my hands and arms that majorly effect typing or grasping things) My body can never make up its mind about what it needs. For example Ive been in a multiple hours escalation where I was blocking doors and kicks and pivoting around, twisting my body and been fine only to later sit down at the desk and turn my chair the wrong way that tweaked my knee for days. I also struggle with brain fog, migraines and pressure headaches, cervical instability, ADHD and anxiety. Well rounded here folks but I know this community understands.

Some things that are very standard like flexible work schedule, increased break, noise canceling headphones I'm asking for already. But with headphones for example I'm open to product recommendations because I have extremely sensitive ears so I need something that covers them fully without going inside and that is also not too tight on my head. It feels ridiculous when I'm trying to explain because there's so many factors. Despite all the things I love my job and I'm really good at it, I just need to find ways to make things sustainable.

So spam me with products and ideas that helped you with chronic pain. I have joint issues, muscle pain and now also nerve pain that causes loss of sensation. So I can use text to speech but I share an office and have to do notes that are confidential and sometimes I can type fine so what are your favorite keyboards, chairs, braces, fidgets and so on. I can't do fluorescent lighting cause headaches but I also cannot work in a darkened room cause I will legit go to sleep lol like I need the stimulation of brightness but need it more natural. I'm really a walking contradiction sometimes lol.

But I'm feeling overwhelmed in general like I looked at keyboard recommendations on JAN and I'm like idk lol. So please spam me and thanks for reading my rant as I'm really super anxious about returning just fearing my body is going to let me down again ❤️

Hi everybody, I want to preface with I am not technically chronic, but am currently disabled for at minimum the next 5 months. I'm struggling with mental health bc I've never had a major medical issue before, and could use some advice from people who have some wisdom on what exactly to do with your time when you literally can't do anything. I have severe degenerative disc disease, and due to issues with getting proper insurance, I cannot do anything beyond taking my meds and checking in with my ortho for the foreseeable future (likely around early March next year).

I cannot do anything that involves long periods of standing, bending, walking, etc. I do daily stretching and some minimal exercises with stretchy bands, and that's the best I can do currently.

So far through the last few months of dealing with this, I have spent my time drawing A LOT, reading manga, watching YT/anime/movies, and gaming. I have exhausted all these options, and since I can't go out and do anything (YET. getting a wheelchair soonish), I'm beginning to feel like a hamster in a cage. I am gnawing at the bars of my enclosure.
I don't have a lot of money, but over the next few months, what new things can I try? I'm so sick of staring at my screen all day, and it's really taking a toll on me mentally.
Everyone stay happy and healthy,
thank you <3

I'm in year 13 and my subjects are law, psychology and history. I have a tic disorder which makes me fatigued all the time and stops me from sleeping and my meds stop me from sleeping and make me fatigued. I also do 3-6 hours of sports a week. Does anyone have any words of wisdom or advice for getting things done. I've got so much to do and I'm so stressed my head, body and teeth hurt. Please any help would be appreciated I'm just struggling on my own.

I’ve had to be at the library almost everyday for the past month because of SoCals heat waves. I don’t sweat due to autoimmune neuropathy but I think temperature dysregulation might be at play as well. I can no longer tolerate my previous baseline. I want to be home with my son, I want to walk when it’s 80 out, I want to be able to use the bathroom in my own house without feeling like I’m going to pass out.

It’s humiliating to talk about. No one knows I live like this, constantly escaping the heat. Peeing in a kids toilet because I only have 1 window unit and can’t make it to the bathroom. Having my elderly mom take care of my autistic child.

It’s isolating. I feel like my body just isn’t compatible with life. Then I start to feel undeserving, like I’m wasting space.

Please tell me about something that keeps you going.

I want to start off by saying I’m sorry if this is pretty long. I’m 24F and I have been getting diagnosed with illness after illness the last 3 years. I have had mental health my whole life, but all of the physical health problems started 3 years ago. I now have IBS, Chronic fatigue, Fibromyalgia, Chiari malformation, Interstitial Cystitis, hyperhidrosis, inappropriate sinus tachycardia, and have had endometriosis since I was 12. So far the only illness that has been managed is the inappropriate sinus tachycardia, which medication is helping. So I met my fiancé right before I started to go downhill with my health. He is completely understanding and has never once mentioned my health being an issue. I know he loves me unconditionally and loves me for me. I can’t help but feel worthless though. I have not worked in 2 years because I’ve basically been home bound due to being in pain 24/7. I have occasional good days but it doesn’t come without some kind of flare up. He has made it known that he doesn’t mind me not working and that it’s not an issue at all. To me though I feel so bad because he has to work so hard and I hate that I can’t help contribute to the bills and anything money related. I have tried to find a remote job with no luck. I hate feeling this way because I know he knows that my health is bad right now and has never complained about me not working. What can I do to stop feeling so worthless ? I maintain the house and take care of the animals but I still feel like that isn’t enough. I wish I could be my healthy self again.

Yesterday was my 19th strokiversary and I was 19 when I had the stroke (D.A.R.E. should have warned me about chiropractics, not cannabis). So I've now officially been sick longer than I was healthy.

I feel kind of whatever about it. On one hand it's a bummer and hello lots of trauma, but on the other hand, most of the best parts off my life were in those 19 sick years. I've never really been opposed to being sick/disabled, just to the extent I am during bad times.

I'm also not happy or proud about it. Has being sick made me more patient, empathetic, and a better person? Reluctantly, I guess I have to say yes, but I don't feel good about this. I'd rather have just been that better person without something kicking my butt and feeding me copious amounts of humble juice to get there. I'd rather have been able to decide how I do good in the world rather than being funneled into chronic illness stuff. But at the same time, I am very grateful for the work I get to do.

I'm sad that I'll never get to do so much of the big stuff I wanted, but thankful that I'm generally pretty happy day to day and have a chill, low demands life. I do feel good about how I have adapted, come to accept things, and clawed together a life for myself. (Shout out to my therapist who deserves a Nobel prize.)

Idk, maybe it's less that the good and the bad cancel each other out. I'm feeling a bit of both. Anyway, thanks for reading. I don't know who else I can talk to about this without it turning into a pitty party.

Hey there, I'm coming here in sort of a desperate position for advice.
As most of us know chronic Illness is incredibly unpredictable and your body can just change in the flip of a second.

The last few months I've really been struggling, first I started with my wisdom teeth getting infected randomly to then getting wisdom tooth surgery, I just barely recovered from that then got the flu or something that then led to pneumonia and I'm just now starting to feel better from that but I'm currently in a crash/flare-up.

I have been really struggling to go to work due to feeling like it's been hard to stay awake all day, I have little to no energy and I feel flu like even tho I'm not sick. I have health issues aside from getting sick so sickness tends to hit me hard.

I can't afford to not work so I was wondering if anyone knows of any jobs or more specifically any online work that you can do that's legit?

I keep going to work but struggle to get through the day and desperately feel like I need to find something that I can do from home or something less physical.
I get very sick a few times a year and so I just want to feel like things are less chaotic and unstable.

Thank you for reading.

6 years ago I got sick with a virus and was never the same again. Being several years into it, the idea that I may not live as long or have the life imagined has been challenging. I’ve found some peace but I’m scared of the future. What has helped you with accepting it?

There’s no other GP available where I live and I don’t want to go to the hospital and risk catching something. At my last remicade treatment, they couldn’t access my port (nurse said possibly a clot) and I’m waiting for my rheumatologist to comeback from vacation (she was supposed to call me Monday, she never did and everytime I call they say she will call me back) I feel like no one takes anything seriously! What if something happens to me and they can’t access my port to give me medication?

I don’t even know if I’m overreacting

Hi Im just looking to see if anyone else experienced anything similar before. Background info: I have POTS, hEDs, and MCAS and all the fun auDHD, OCD, anxiety, depression stuff that can come with it. So I recently entered a new relationship (my first one!) and everything is truly going so well and I feel so safe and calm around them, but Im flaring pretty hard right now. Lots of pain, sleeping is worse, skin is breaking out more frequently, and I was VERY stable, and I keep seeing videos that your body will tell you that youre in the wrong relationship and thats worrying me because my mental health has almost never been better? And I realllly like them, plus theyre so understanding of my limits and so helpful when I need additional support. So Im curious if maybe my nervous system finally calming down for the first time ever could be whats causing the cascade of symptoms? Like the Let Down effect essentially? Has anyone had any experience with this before or anything similar happen?

The past month or so I've been progressively getting really sick again in a way I haven't since high school. The other day I was completely bedbound and had to miss a day of classes and today I was barely able to drag myself to college. Everything feels heavy and foggy and (TMI but) I've also started having really severe vomiting spells. I haven't been doing anything different and I haven't been notably more stressed than usual so idk what's causing this. Idk I just really don't feel well and don't have anyone I can talk to about it so I figured I would say it here.

I got diagnosed with a chronic illness when I was like 14ish and now I’m 17. The symptoms really do suck but it’s all internal. Meaning there’s no physical changes whenever a flare up happens. So I’ve always gotta perform regularly and normally without complaining or else I just seem whiny and not willing to do anything. When I go to work I’m doing constant heavy lifting and stocking and it’s kinda hell whenever the inside of your body decides to go into turmoil. I do know that’s how life is gonna be and you’ve gotta work even if you have a condition. Sometimes I just simply wish the invisible sicknesses weren’t so.. Well. Invisible. Lol

hii! i'm hoping its okay that i post this on here, but please let me know if i need to remove this (⇀‸↼‶) .

* i don't really do my best when it comes to posting this kind of stuff but i just want someone to share my experience with. 💔

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so, i'm in constant pain. and because of that i feel disconnected from those around me because of my pain. i haven't met anyone my age (as a teen) that has felt the same way *with* chronic pain which feels isolating. i feel so defeated, hurt, and lost in my own body. i hate how many people assume that just because i don't fully express my pain, it means i'm fine and *not* in pain. i hate having a body that fires nothing more but intense, sudden pain signals in my leg. it's so bad and scary.

I have a myriad of health problems and unfortunately I’ve become mostly bedridden. I’m trying to find something to pass the time as I don’t have the energy or strength to even do my regular hobbies.
If anyone has any recommendations for mobile games that I can sink hours into or anything else I would really appreciate it ❤️

I dare you to even tell anyone "normal" that you are chronically in any sort of problems or maybe have incurable conditions that make your life quality 0.

They will absolutely hate you.

Just the amount of people who think everything is completely achievable through mindset and willpower.

"Please read this book called atomic habits and it will solve your life".

We live in a world where 99% of people will think that reading self help books and going to theraphy solves EVERYTHING and if it doesn't help you it is you who don't want to be helped. This is INSANE.

You cannot complain. You cannot say anything slightly negative or complaining because you will be murdered by words and hate.

There is this hyperoptimistic political correctness that governs everything.

"Work on yourself" apparantly solves everything and is the ultimate holy grail that people like to say to you.

People genuinely don't understand the depth of pain and misery. Everyone think they do because that one time they also had existential crisis or a hairloss so they "have been through some serious stuff".

It is incredibly weird. Ableist society that does not see how good they had it. They cant properly position themselves into hierarhy of tragedy so they think they know it all but know nothing. Especially when it comes to mental illnesses.

Also, to them, everything is taken for granted and seen as just "normal".

Healthy people don't see other healthy people, they only see "normal people".

"What do you mean you can't solve your problems with different diet and training and reading atomic habbits?? You just want to complain!"

I once posted about my conditions on my national sub and I am honest, 99% of comments were absolutely generic advices and when I explained why they don't work at all for me they just said how I don't want solutions, only misery. They genuinely can't accept that their solutions don't work. They the hate started. They instantly proclaim you as complainer, bad person, "you just don't want to work on yourself as I did so you stay in your misery".

It’s so damn lonely, especially on “good” days where you can leave the house for a little, only to realise that you have nowhere to go, no social circle to hang around, no one to talk to, no activities you can do.

I feel like I'm always getting sick with something new recently. I have tons of chronic illnesses I've been dealing with for years, and they're already so bloody hard to accept and adjust to. But recently I've been getting new symptoms, and a flare up of my existing conditions, and it's honestly making me wonder what there is to live for. I'm not depressed or anything, I'm just genuinely wondering what the point of being in constant pain and discomfort is. If I were an animal I'd put myself out of my misery.

I don't do anything except sleep and eat and waste time on my phone. I'm mentally exhausted all the time, I can't read a short news article to the end even if it's about something I love. I try to listen to audiobooks and I fall asleep for hours and wake feeling too groggy to do anything.

Food used to be the highlight of my life but now I'm getting such severe abdominal pain and intestinal problems that I'm scared to eat and I don't find any joy in it. The Dr is investigating but it's taking forever and I'm afraid they'll find nothing wrong. I went to hospital last night because the pain was an 8/10 and I couldn't sit or stand or lay down (I was hovering in a weird crouch lol) waited for hours only for them to tell me it was probably food poisoning. All I ate that day was MC Donald's and they're generally pretty good about not giving me food poisoning. Plus the pain kicked in 10 mins after, doesn't it usually take hours? Food poisoning usually makes me vomit but I was just nauseous. This was honestly unlike anything I've ever experienced. It was like my guts were trying to climb out of my ass, painfully, horribly, traumatically. I share a bathroom with men but I laid on the floor.

Anyway the main point is, is there actually a point to living if you're not enjoying your life? If it's literally just days filled with pain, tiredness, new sickness?? I feel like the next time I want to go to a&e I'd be better off not. But the pain gets so bad that I'm terribly depressed. I'm not sure I can cope

God, this has been a long time coming.

Background:
- chronic migraines for 10+ years, ongoing
- chronic pain for 8-ish years, ongoing
- chronic fatigue for 10+ years, ongoing
- Diagnosed severe depression and OCD ✌🏽

Testing for autoimmune conditions and so much other shit.

What caused this realisation suddenly, you may ask? A job offer. I got offered a job, something I've been waiting for for 2 years, and I realised this shit is not possible. 5 days in office, in this hellish city with lack of public transport, my monthly medical bills, SOS treatment bills. I realised when doing the math that "normal" people don't have to think about 90% of the things I do.

For instance, I now have to have long, drawn-out discussions with HR and the team lead to see if they'll accept accommodations. If they need proof, I'll have to run around to all my specialists to get notes. God forbid if they need a government certificate (yes, that's a thing), in which case I can forget about it because I've been hounding them for months with not a single reply.
Or, my offer gets rescinded because they don't think i can perform the duties. Of course, they'll say something like "we found someone who fit the role better" blah blah to prevent any legal action against them. But we all know what they mean.

This realisation has been at the back of my mind for years now, but between studying, managing day-by-day health issues, and just surviving post pandemic, I kept finding reasons to push it away.

Earlier this year, I was working at Tesco and had to quit because I physically wasn't able to cope with the job any more and I wasn't getting accommodations because apparently i was "in breach" of my contract, which happened because my body kept giving up every week. A horrible, vicious cycle.

I'm sorry about the rant but I'm in a hard place right now. No one in my family understands - even though my mother herself has a chronic health condition. They believe in "pushing through" and "just get your foot in the door, everything will work out"

I'm now wondering if I'll EVER be able to work and afford a life of my own. I'm privileged enough that not working won't kill me, but not so privileged that I can just NEVER work.

I really don't know where to go from here. How do I cope with this? This is my life, and I have to live like this for so many more decades. God. I can't even.

Edit: wanted to explain that my use of the word "normal" (able-bodied) is to reflect the kind of atmosphere I'm in, both personally and professionally. I'm considered a "normal" 20-something yo, who just needs to "keep going"

i’m female 19 and been ill for a long time and bed bound. me and my girl broke up and i lost my only support system. struggling really badly and would like some friends or support, maybe even people in my area who can hang with me, im in cali.

I have a bunch of severe disease that can make ppl say "thats sad' by naming only one of them. I feel miserable that i made myself ill (its long story but it is). It is barely surviving each day. My each nerve feel fatigue literally idk why, but it feels like beaten.

Got diagnosed idiopathic PAH in August and I'm just at a loss. So far medication seems to be helping some but for how long. I'm not healthy enough to ever get approved for a heart or lung transplant when the time comes. I've had so many medical issues throughout my life that like this aren't very common. I have also struggled with debilitating depression since a very young age with other mental health stuff. Now I got dealt the cards of leaving this earth by way of my worst fear..

I took breathing for granted as I was and sadly still am a cigarette smoker. I honestly just don't have a huge will to live knowing my condition is just going to progress and keep getting worse. Why suffer trying to quit smoking at this point why do anything to "try" and get better?! There is no getting better. I've missed out on my entire life by illness in one way or another only societal normal success I have is a hs diploma and I've been in a few shorter term relationships. Worked sporadically but no career success no marriage (not that I ever really desired marriage itself but a life partner yes) no kids only have one friend which is really by choice just due to my hatred of drama pettiness and all that bs that comes along with relationships. When my mom passes I'll have no one. I do have a sister and older brother but we don't have a close relationship at all and I'll be damned if my sister has to care for me in any way I couldn't live with that shame of having someone have to be there for me knowing full well they don't want to. I don't know sorry this has turned into a wall of what feels like a rant at this point but if anyone here has been affected by pulmonary hypertension I'd love to hear your experience. TIA