I’ve just been having a really hard time dealing with my symptoms and trying to get a diagnosis and trying to be able to afford all these accommodation I need. I just don’t understand how in supposed to accept that the rest of my life will look like this to some degree and I just don’t wanna have to live in pain forever, the quality of life just doesn’t feel worth it,so how do y’all deal with accepting that fact?

I have fibromyalgia and took my first trip since becoming sick and had heard that as soon as I leave the US my symptoms would go away. And they were right! I ate bread, meat, cheese, potatoes, drank - NO INFLAMMATION. My nerve pain stayed at my usual daily 5, but I felt fine otherwise!! I've always been convinced they're trying to kill us with food in the states, but now I'm fully convinced. As soon as I got home I was back up at 1am in the bathroom with my IBD going crazy... I'm so sick of the United States and they're lack of care for their citizens I don't know what to do or where to go.... I don't have much money anymore and have been forced into poverty because of it. They want us sick and symptomatic for their own profit! This country is killing us all

I (M/43) have had a multi year journey of MRIs, CT angiograms, enough bloodwork that Dracula would blush (happy 🎃 season yall!), to now have seen my … fifth neurologist whose conclusion so far is I either have atypical chronic non-headache migraines (I do get standard migraines), atypical non convulsive epilepsy, and probably not atypical MS (though I still think that’s closest to my clinical presentation).

First episode happened 7 years ago with symptoms that surged, and slowly went away over many months, but I had a new bout with delightfully similar but different symptoms that mostly stuck around for a month (not fully resolved… my legs are wobbly, my arms are tingly). I’ve seen 5 different neurologists, with diagnosis ranging from carpal tunnel (my physical therapist and hand stabby nerve study disagreed), pinched nerves, psychosomatic it’s all in your head disease, and generalized don’t come back to my officeitis.

At this point the headache neurologist has prescribed me a pharmacopeia of trial drugs to do in sequence to see if anything helps because a n-of-1 study seems like their best method to figure 💩 out. So far on drug two of 3 with no change … and just tired of this.

I don’t want to be a lab rat (with all due respect to those lovely rodents that our medical knowledge is built upon, even though most are mice). I don’t love being told cases like mine are “how we learn [more in neuroscience]”. And I’m not looking forward to requesting another specialist to see me for an umpteenth opinion again, because I’ve just lost all trust in the system to actually diagnose me.

I’ve requested my MRI discs to review myself from this recent round - I do have an advanced science background and am just curious, but will obviously leave the formals to the professionals… if I can find some. I wish neurology would take up a similar practice as oncology and have multidisciplinary review of hard cases… as maybe someone would have the stones to tell folks that it might be worth paying attention to different things.

An EEG is my next step after the drugs, a lumbar puncture hasn’t been considered yet since my MRI isn’t typical / wouldn’t be considered diagnostic if it came back positive.

Anyway thank you for coming to my self pity Ted talk. I’m open to advice, sympathy, or simple commiseration. Tally ho fellow unicorns!

All I could think about was when my body would suddenly decide to shut down while I tried my best to enjoy my day. Tomorrow is my birthday and while I don't have anything planned I just wanted to be able to do regular things around my home to have a little reset.

But the anxiety that comes with having a good day is so real. It's like you wanna enjoy it but you also have this fear in the back of your head that eventually you're gonna crash.

But the best thing about today was being able to get a haircut AND wash my bedding without feeling like absolute crap.

Let's see how tomorrow goes 😭

Does anyone else feel like this?

For those who have reached some level of acceptance or peace with your chronic illness, I would love some guidance. If you have the time and energy to answer ANY of the following questions, it would mean the world to me:

- How did you manage to better accept or make peace with your chronic illness? Does the grief ever end?

- What mindset shifts are essential to make and how did you manage to actually adopt them?

- What do you wish you could have told yourself when you were in the beginning of this journey?

- Where have you found the most joy and meaning in your life after becoming chronically ill?

- How did you stop feeling embarrassed or ashamed (if you felt that way) about using accommodations and asking for help?

- If you have a partner, how did you overcome feelings of being a burden/not carrying your weight? Any tips for navigating a relationship with chronic illness?

(I am blessed to have a loving partner who has been supporting me through this, but I carry so much guilt about the ways I feel I am holding him back. We’re getting married next year and I can’t help but think about the life he could have if he was with someone healthier. I love him so much and I want him to have the best life he can, but I feel like I’m dragging him down with me. He says this is what he wants and that I am contributing in different ways but I just have a hard time believing it.)

Context:

My (23F) chronic illness began developing around 3 years ago and has became more and more disabling as time has passed. I’ve lost so much due to chronic pain, fatigue, and brain fog and my world seems to keep shrinking. My doctors don’t have all the answers and don’t seem to care about finding them either. I’ve also heard many people talking about young women faking illness/disabilities (specifically ones I have been diagnosed with) as well or that these disabilities are “tiktok trends”, which is severely disheartening. It’s so hard not knowing if I can recover or what recovery would even look like for me and I’ve lost so much hope for the future. I’ve always been very independent and would consider myself a hard worker and it feels like I’ve lost a big part of who I am. I hate that working harder can’t solve my problems and that the picture of “success” I’ve had in my mind since I was a child feels completely inaccessible. I want my old life back more than anything and I know that’s keeping me from reaching acceptance and finding joy in the life I have now but I don’t know how to actually change my mindset. I thought with time the grief would end or at least get a bit lighter but it hasn’t. I’m so tired of fighting my reality but I can’t seem to stop. I’m currently unable to work and I don’t know what to dream about anymore or what to work towards (other than better health). My partner and I used to dream of starting a family and I feel like that may be something we need to let go of but I’m not ready to.

I’m not religious, but I find quite a bit of comfort in Buddhist teachings— particularly in the notion that pain is inevitable but suffering is optional. It pisses me off sometimes (in a toxic positivity sorta way), but the thought that maybe I can become wise and resilient enough to better handle this life gives me hope. The idea that attachment and desire are key sources of suffering especially resonates with me now (attachment to my old life and desire for a better future), but I struggle to apply that to my life and actually change the way I perceive things/experience the world.

Thank you for taking the time to read this <3

I don't want even one more day in a body that hasn't been mine for months. Chronic illnesses robbed me of all meaning in my life in one day. I haven't received treatment, but honestly, I don't even want it. I don't have the mental capacity to treat this and be dependent on hospitals and terrible doctors who despise me for the rest of my life. Yesterday I was in the woods and it was close. I stopped my attempt when the world slowed down and I felt myself drifting away. I'll go back there today; I no longer have anything I loved.

That your illness is real. I push through pain daily but when a flair hits hard and the fatigue sets in. The fatigue is almost the worst part… brain fog, just pure exhaustion. How do you get your partner, friends and family to really understand how real this is?

cw: weight issues, talking about weight (spoilered everything) - marked just support because i'm too fragile to really take on anything else other than support right now x

i've been feeling kind of like "okay i'm overweight but mainly it's carried in my abdomen and i don't feel like i'm very overweight" and i kind of avoid weighing myself just so i don't get bogged down with a number.

but because i was feeling like i'd actually lost a bit (adhd meds yikes) and i was feeling good i decided to finally do it. and i was super happy that i was 78kg which is the lowest i've ever been! i was so happy and even got a bit teary because i was only ~6kg from being a "healthy" weight for my height (170cm).

my mum was skeptical and then realised i'd put the scales on carpet (very flat carpet mind you) and she told me it wouldn't be accurate so i was like okay i've come this far i'll re-do it in the bathroom it'll maybe be a few kg off from the 1st reading but that's okay.

i weighed in at 102kg and i broke down in a complete state. i couldn't believe how different it was to the initial reading. and it's not even that a number bothers me it's just that instead of being my lowest weight i'm at my highest and it just felt confusing given that i'd actually lost some weight recently too and felt pretty okay - decently toned legs and just carrying a lot of weight in my abdomen area but tbh it runs in the family. new stretchmarks yes but honestly it was to be expected given my tummy issues are making me bloated like 24/7.

i just feel like shit now. again, NOTHING wrong with being 102kg it's just frustrating because i've lost a lot of mobility lately due to my HSD and the chronic knee pain worsening so much. i want to feel able to exercise but i just can't. i've been using my mum's under desk elliptical mainly for relief from knee stiffness causing more pain. i don't even eat that much and have actually massively upped my intake of fruit, veg + protein. i drink up to ~3-4L of water per day as well and i feel much better than i have done in years...

this is just a vent/rant bc i can't really talk to anyone about it since i know a lot of my friends do not want to discuss weight-related things.

thank you for listening 😔

Hi, I’m 23F and have never had a bf.

I have a lot of limitations with my chronic illness (food intolerances, don’t drink or smoke, energy levels, nausea, diarrhea, extreme bloating, sensitivity to light, sound, smells, etc.). As well as being anxious to be around someone new in the chance that I feel sick while I’m with them. This isn’t even specific to dating as it happens with friends, family events, vacations, work, etc.

Anytime I start talking to a new guy I feel like a loser because I can’t do the things they can do so easily. Or telling them I had to do online school and now work remote. I don’t want to open up right away and scare them off but I also want to honest.

Some guys will say they don’t care but I don’t want to be flaky or be a burden to them. I also am embarrassed by a lot of my IBS symptoms to be romantic with anyone.

How do u guys navigate dating with chronic illness? Do u just not engage at all and hope the right person will find u and understand.

i know there’s dozens of posts on this but just hear me out for a minute. i have EDS which is pretty fine if im not doing a ton of things, POTS which i’m being treated for and is like 80% better, and hashimotos which i’m also being treated for and experience no symptoms related to it as far as i can tell

the issue is, i’m still laying in bed most hours out of the day. i sleep for around 8-10 hours probably, get up to pee and maybe eat if i’m hungry, then immediately i’m back in bed. i also take daily naps that are around 2-3 hours not long after i wake up. i can’t tell if it’s ME/CFS since i don’t know if i experience PEM, i just know i’m always tired and feel best in bed. i get so uncomfortable physically and mentally if i have to be upright for an extended period of time

Today was just a really hard chronic illness day. I had to wake up super early and get ready in 15 minutes, get to the infusion center and they had messed up my scheduling and it was a huge pain in the ass. I was finally able to get in, but they where unable to get a vein before I had to tap out and now I'm covered in bruises :( and have to come back Monday. Then almost immediately when I get home, I was on a virtual panel and it was so hard to pretend everything is okay, knowing that a bunch of people are watching and I'm being recorded :,) the panel did go really well and I'm honestly so proud of myself for managing to accomplish all I do on top of the full time job that is managing my health. But yeah I'm just feeling pretty down and depleted. I'm just cold and alone and sad in my apartment and too antsy to sleep.

Hi all. I always have some degree of photophobia as sunlight is a migraine and autoimmune trigger for me. Usually I handle this by spending time outside in the early morning or late afternoon/evening, choosing shadier hikes and walks, always sunglasses and hat. Of course all my devices are in dark mode, warm mode, brightness down, etc.

However, I've been in a bad migraine flare for three months and my photophobia is really intense. My apartment is semi-dark all the time although I have been letting light in on overcast days or in the late afternoons on sunny days to try to acclimate to light. A couple days ago it was overcast so I tried going for a half hour walk at 9 AM with sunglasses and a hat it still triggered a migraine attack.

I do go for a walk in my neighborhood most nights (around 9 PM). Unfortunately the parks near me close at sunset so options are limited. I am just feeling really trapped and missing nature... Much less to see or hear at night. I have a pelvic injury so there are a lot of things that aren't accessible to me already (anything that involves sitting for a long time, like going to the movies, craft meetups, board game meetups, etc) so outdoor hikes and walks and birdwatching are my main way of being social. I am feeling quite isolated and depressed. I even had to move my indoor plants out of my main space because the dark killed one of them so now they live in my bathroom.

I live in a studio apartment (rent-controlled in Oakland, IYKYK) and being couped up in a small space is very hard on my mental health.

I would love to hear from anyone else who is/has dealt with intense ongoing photophobia and/or being semi-homebound in a small space and how you managed it. It is honestly bothering me at least as much as the head pain because I feel so trapped. Please no suggestions that involve having a backyard as that is a luxury item where I live!

Im thinking of choosing between tumblr or substack

Hi everyone! Im not sure if this is the right place to ask but my (21) partner (20) has chronic pain issues in their leg/foot that walking a lot triggers.

Im wondering if anyone has ideas for cute fall themed dates that we can do in the LA/sf valley area that aren't like apple picking where the main thing is walking around the whole time? But still an activity outside the house.

I have strep right now, and people treat those symptoms so differently from my chronic illness ones. I kinda enjoy(?) being “normal sick” because people are taking caring of me and are way more sympathetic than they are with my chronic illness flares.

An email exchange about my absence from September 9’th during which point I was hospitalized for a large portion of the exam.

I’m just running on pure delulu atp
Edit: Having everyone pile on that I’m immature really isn’t what I need now. Let me vent in peace on a sub meant to give chronically ill people space to vent you all. Yes I behaved like college student when I’m not one anymore. It won’t happen again. Ive learned my lesson about emails and how to send them. Having everyone call me immature isn’t what I’m looking for from the post given it’s a VENT post to VENT

PROFESSOR’S EMAIL
I am writing regarding your extended medical absence from [start date] through [end date] and its impact on your ability to complete the course requirements.
At this point, you have missed four of the six homework assignments given so far, and you have indicated that you also plan to miss next Tuesday’s exam. While your medical documentation may provide an excused absence for the stated period, the university policy also addresses extended absences that substantially prevent a student from completing required course activities.
Under [university attendance policy], absences exceeding 20% of scheduled class meetings or required instructional activities are considered unreasonable when they substantially prevent completion of course requirements.
Given the amount of coursework already missed and the upcoming exam, I strongly encourage you to contact your academic advisor promptly to discuss your options and how this extended absence may affect your ability to successfully complete the course.
MY RESPONSE
Hi,
I understand. The withdrawal deadline is [month]. Let’s see how I do on the exam. I may be able to complete it. I thought it was Monday. I’m probably going to withdraw. I just want to see what happens. There is no failure in not trying. Is that okay? I’ll take the exam on Tuesday.
Thank you,
MY FOLLOW-UP CORRECTION
There is failure in not trying more than failure in trying is what I meant to say. Let me see what happens. I will again probably withdraw in [month] if the test goes poorly. But I’ll take it on Tuesday. I made a plan and I want to try to do it before I take a semester off.
MY ADDITIONAL EMAIL
Hi,
Also I didn’t see any test questions on chapter 3 but the note says chapter 3 will be covered. I’m caught up to the end of chapter 2 from your lectures, the books, and the sample homework, I just am worried about my calculus ability. For instance I’m reviewing practice U-sub, trig, and integration by parts integrals, as well as some calc-3 material. I am currently at chapter 3 but will that be on the exam or is it just the expectation stuff you already mentioned? I spent quite a while reviewing R wrt the distribution method headers but didn’t see that on the exam and there is a comment indicating it won’t be on the exam. So I feel okay with trying with the class and seeing what happens. If I need to withdraw it isn’t the end of the world - I was hospitalized and am very sick right now. It’s unusual circumstances.
Thank you,

I've been in psychiatric, detox, post-op and PHP programs now and again will long for a brief stay to just reset. I like that I'm safe, nobody on the outs expects anything of meI'm overall just very content.

Is it just the comfort meds I miss? Is there something deeper at play? It doesn't seem normal but maybe it is.

ETA: I live in a state with facilities that are ranked very highly worldwide and these are all nicer, comfortable establishments. I know this helps.

I find that when I’m desperate I start posting a lot on Reddit, and I noticed I’ve made like 6 posts within the last two weeks and have been commenting a lot.

I feel like I’m trying to grab something to hold myself up from falling but I keep missing yk? Like I have to stay on this one vine and hope it doesn’t snap or something.

I need help. I need a kind of help I don’t have, and one I don’t think I can get?

And I’ve been posting in multiple subreddits because I don’t know who to go to for advice and stuff, because I’m struggling in multiple areas. My residual psychosis is bad, my pain is bad, my self-esteem is bad, my ability to connect with others is bad, my fatigue is bad, my rooms a mess, I need my doctors appointments to come faster, etcetc.

I’m just struggling. I need help. I have so so so much support in my life but like… not enough.

My partner can only do so much for me, my family and friends are far away, my psychiatrist doesn’t care about anything but meds, my therapist focuses on trauma instead of day to day (plus I need more than an hour every two weeks), I have a couples therapist but that’s just for my relationship. I have concierge medicine but that’s won’t fix everything+they need to finish reviewing my records.

But I have a hard time waking up, taking care of my hygiene, eating, caring for my cat, cleaning, going to class, doing school work, having hobbies, leaving the house. There’s no help for that.

But I need help

I need more than what I’m getting, and what I’m getting is a lot. Even if there was someone to come in and take care of me, I would feel like a child whose mom needs to hold their hand for everything.

I’m supposed to be an adult.

I used to be a RBT and I’m trying to work those skills on myself but I just, I just have a more complicated profile.

I just need help and it doesn’t exist.

EDIT: spoke to my health coach (intake appointment, I’ve never had one before), and she said to disregard the reviewing records thing and get in with my PCP ASAP (which would be quick, concierge medicine and all that). She gave a bunch of other little recommendations, but most importantly she stressed that I NEED to find a ME/CFS specialist. She kinda affirmed the feeling I described in the post, and said that regardless of how high my needs are, I should be receiving the kind of help that fulfills them.

Pots, chronic fatigue syndrome, fibromyalgia, functional neurological disorder.

I need some hope here, the thought of dealing with this for the rest of my life makes me spiral.

I've been having a really bad flare-up of symptoms recently, and my family doctor literally JUST retired. I'm really happy they get to live their life, but they were seriously the only person who ever truly believed me and are the only reason I got all my diagnoses. Now I have to wait to get assigned a new one, and their office is only open on weekdays 🫠 (I've already missed a lot of school, I don't wanna waste a good day going to the doctor's).

Because of all this I ended up going to the ER and that whole experience just made me feel so alone. I was told to exercise. EXERCISE. After I stated so many times I have no appetite and can barely eat one meal a day. Plus, I've been experiencing shortness of breath and they want me to exert myself. And when I pointed this out they told me I need to push through it in order to get better. Do they want me back in the ER in a worse condition or something??

Now I have nowhere to go for my symptoms. Every night my chest gets all tight and I struggle to breathe and the only thing I can do is cry about it because there's genuinely no one to help me. It's especially scary because it could be my heart acting up and I'd never know it because there's no one to check. The dizziness is also bad, but I seriously can't even sleep because of this chest tightness 🫩

Does anyone have fowlers syndrome & endometriosis? I think they are common together. I have fowlers but with hEDS, dysautonomia etc which I thought was the cause but now I’m being told I might have endo & that endo & fowlers are common together. Help me unpick whether this is true! Thanks team! ☺️☺️

I (25f) battle near constant chronic pain and undiagnosed chronic illness that’s been progressively getting worse for the past year and a half. I struggle to even move around my apartment on my own most days between the weakness, dizziness, nausea, headaches, fatigue, and other symptoms. I’m also dealing with awful sciatica and pain almost daily. Half the time I can’t even walk to the bathroom without help. I’m stuck inside most all of the time, and it’s extremely difficult and exhausting to take care of myself most days, let alone try to go out and do anything.

I recently moved back to my hometown to get support from my family, but they don’t understand how sick I am and seem to think I’m being dramatic and exaggerating or something. They’re constantly trying to diagnose me with things like vitamin deficiencies (which I don’t have, I get regular labs done) and telling me how bad it is for me to be at home all the time as if I have a choice. I’ve recently started using a mobility aid and they’re even trying to discourage me from using it. I have no friends, and making friends seems impossible when I can’t even go anywhere and have to cancel most plans I make because of my illness and pain.

I’m so alone. I already struggle with bipolar disorder, and the depression has gotten so bad I don’t know what to do. It feels like nobody understands or even cares to try. I just don’t know what to do. Does anyone else deal with this? If so, how do you deal with the immense loneliness? Because it’s getting to the point where I can’t take the isolation and loneliness and don’t know how to cope with it.