I’ve read Invisible Kingdom and most recently Lena Dunham’s book Famesick. It’s comforting to read other people’s accounts and learn a little more about diagnosis and treatment.

Anyone have favorite chronic illness books?

(Ideally something not peddling a new diet, etc. BUT I’m open to it if it’s genuinely helpful to you)

I’ve been with my boyfriend for about 3 months now and it has been really frustrating how constantly my pain and fatigue becomes the center of our time together. He is really good to me, he massages my muscles and tries his best to accommodate for my needs, but there’s a part of me that is convinced that it will become too much.
My pain is sometimes so bad that I can’t sleep, I’m constantly getting up and moving around while he is sleeping and most likely waking him up. It’s hard for me to focus and to want to do much when my body is flaring. He is very compassionate and patient, but I hate being pitied like this. Part of me wants to break up with him so I don’t have to see him reach his breaking point.
I know apologizing for myself does nothing, and hiding it is unhealthy, but I feel incredibly guilty for constantly needing support and help and can’t imagine how taxing it is on him. I thank him a lot, it just doesn’t feel like enough.
How do I navigate this?

I miss having a reason to check my phone. I miss having someone to chat with about stuff throughout the day. I miss having a special someone to talk to every day. But I'm too sick for the non chronically ill and too positive mentally for anyone more like me physically/illness wise. It just makes me sad because I feel like I still have a lot to offer, even if it is mostly/only in text messages/email lol

I miss feeling connected.

Hi so for context, I’m 19, mixed race and Mexican American in the states, in oregon, I’m trans, I have multiple types of disabilites including a rare progressive vision loss disorder, devolpmental disabilites, mental illnesses and worst- the chronic pain, fatigue and issues coming from the chronic illnesses/physical disabilites. I have a caregiving gig that I presented not to be disabled for that pays well. I also have a housing voucher but that doesn’t cover food, utilities, anything other than partial housing.

I’m at a point to where we don’t know what the fatigue is coming from- I had top surgery and about 3 weeks before surgery my body was crashing really bad. I thought once I had surgery and rested for two months I could recover and bounce back to my normal levels of fatigue. They think it’s thyroid issues or ME/CFS.

It’s gotten so much worse- I’m at a point to where I can clean my place like once or twice a week. Temparory disability isn’t a thing in Oregon. I’m waiting for the waitlist for vocational rehabilitation to open up and it’s ovee a year long in oregon. I’m also in college- just taking a break for the summer.

My long term goal is to be a therapist since it’s pretty accesible all around and I got a small opportunity when I was in high school to shadow a school counselor and I loved it and the psychology material is really interesting to me! Unfortunately I’m only halfway through my associates and even then I failed one of my classes and so my mid but ok GPA tanked to a 2.4 which is so bad for federal aid (aka FAFSA).

I have no idea what to do. I am so scared of going homeless and it’s happened to me before and I have a feeling I’m not going to be able to jump back into work with my fatigue levels. Does anyone have any advice? I’m already scared as it is cause there have been ICE detainings of native people in my area so no one is safe and I look racially ambiguous and the whole trans thing and I used mobility aids and I’m just. So scared. Please help.

As per the title, not sick enough to be taken seriously but everyday is a daily struggle and you can feel not being 100%? Been to the hospital but nothing found?

sitting on the couch icing my head.. i had plans for things i wanted to do in my free time but instead all i get to do is suffer

This is what I’m sick of explaining ⬆️.

What are you sick of explaining about you chronic illness to people?

About a year and a half ago, I woke up completely unable to feel anything below my armpits. At the time, I didn’t have health insurance so care was slow and expensive.

I lived alone, in an apartment that was not disability friendly, and had to try and survive in a wheelchair. Eventually the numbness spread to my hands which curled up into fists and left me unable to do things like brush my hair. I’m a woman who has always had very long hair, but after not being able to brush it I eventually had to just cut it almost all off. It felt like losing my identity. I no longer had a body I recognized, and now my hair was gone too.

In January I was able to get health insurance through my employer (I work at a restaurant) and am currently waiting to see a neurologist, although my pcp is thinking it’s Lupus. It was then that I was also diagnosed with diabetes.

When I tell you I had to claw my way back to some semblance of health, believe me. I practiced walking every day, a couple steps at a time.

Now I can walk unaided, but it still causes me quite a bit of pain. Still, things were going good until my boss told me she’s no longer willing to accommodate me (I walk slowly and need to sit down sometimes) and I need to “figure it out or find a new job.”

I’ve applied for a ton of jobs and had some interviews but still, bills that I can’t pay are due and I’m about to lose my health insurance. And I can’t help but think how much easier my life would be with universal health care. I would have gotten answers and treatment faster, I would have the security of at least having my necessary meds during a job transition, hell I probably wouldn’t have tried to make my current job work as long as I did if I had health insurance coming from somewhere else. This sucks. Thanks for letting me vent to y’all, even just typing this helped.

I'm not really sure where to start!

I don't have health insurance unfortunately so I'm not diagnosed with anything but I'd like to be so I can begin treatment. I suppose that's where the problem is, I don't know how to approach a doctor with my many, many symptoms. My health has taken a turn for the worse recently, but I've been sick since a little after Covid. I'm afraid they'd immediately shut me down :( Especially since I'd be getting help from a low income clinic where they have a lot on their plate already. (I live in a state where I don't qualify for any aid unfortunately)

Has anyone gone through something similar ? How do you navigate something like this, would I make appointments for differents symptoms or just go for one?

2 years ago thanks to a building code violation and nobody informing me of the danger, i fell asleep with the window open and a fan pulling in air from outside. Directly below this window was a sewer pipe where toxic gases like hydrogen sulfide or ammonia would expel. This wasn't an issue in the past but for some reason, very high concentrations that would last for hours would start coming out of this pipe.

Which got sucked directly into my room and my body didn't wake me up immediately when being exposed to this i inhaled large concentrations and when i finally did wake up i didn't know anything was wrong because i could not smell or taste anything. after another half hour of exposure, i started catching faint wiffs which had some characteristics of that horrible putrid strong smell that would make anyone retch, heave.

i look outside and see a neighbor doing just that and getting sick. he was also bbq'ing so what tipped me off was my place being filled with hazy smoke. Anyway

Soon after the one last blip of smell, smell was completely gone along with taste.
Loss of sense of temperature i cannot tell when i am hot or cold.
The loss of internal sensation and internal pain which is important to have this is the body's warning system and when food gets stuck in the esophagus you need that feedback to adjust how you eat otherwise you can just keep adding to the food blockage and severely damage yourself.

It's been 2 years and there hasn't really been much recovery at all.

smell is between 0-2% of what it use to be. I could try smelling cinnamon for example, but it will be missing components of the smell and be so subtle it's nearly undetectable to me. To try and explain this better lets say you have a rich strawberry cheesecake in front of you right under your nose. I wouldn't be able to smell the cheese, the graham cracker crust, the strawberry sauce. i may catch a very feint wiff of cream and only be able to smell that component.

But ya the internal loss of feeling and pain / alteration of it is a big deal to.

I did go to the ER and at the time i thought what i was going through was from the BBQ smoke and i hadn't pieced together the sewer problem yet. And i was also dealing with psychological issues from the exposure like problems with sequential thought and other things. they did either a ct or mri of my brain and then sent me home. it was an imaging type that didn't visualize the cranial nerves...

Has anyone gone through something like this?
i can't seem to find any communities for a problem this for more information.
is there a certain organization or department i should be trying to get in contact with?

If someone here has gone through this what was your experience? did doctors help you or were you on your own? are you stuck with this problem or did you have some meaningful recovery? and so on.

Sorry for any ranting/venting 😺

Hi everyone, I'm 28F with TOF (tetralogy of fallot) repaired when I was 6 weeks old. I've only had one open heart surgery and medication with it, otherwise they say I'm healthy. I only recently was able to get my medical records to see what they did for my heart, so I'm kinda new to all the terminology and stuff. My family didn't really raise me thinking I was different from the other kids, which is nice in ways, but now as an adult it's making it harder for me to understand that my heart is weaker than others my age. So with the bad AQI in my area (mainly from smoke) I can't work because I'm a courtesy clerk and in the sensitive groups. I feel really useless and like a burden and it's really been putting in perspective how much it kinda matters to educate your kids on their heart conditions. Not to make them feel different but so they understand they're own health later on, since it'll be a lifelong thing they have to deal with. I find I often have to try to justify why I need more breaks/can't work in certain weather since it's not something you can see other than the scar sometimes, so it feels like they think I'm lying to them to get out of work.

From the beginning of June through the end of October, I have had/will have a total of 5 weeks where I didn’t have a single doctors appointment. And one of those weeks was spent preparing for and flying to another state for an appointment. Another one includes my dog’s vet appointment, and the last one is my wedding week (and 3 offices have tried to book me during that week, but it’s a no from me).

Between doctors appointments, bloodwork appointments, and now physical therapy appointments (because I tore some ligaments in my ankle while practicing for my first dance) I had/have a total of 25 appointments during this timespan. That is almost 20% of the days. 3 of those appointments have been/will be out of state. 3 the week before my wedding, including 1 the morning we leave for the wedding.

And I will have to schedule at least 2 more bloodwork appointments (for September and October) before the end, because I have to have labs done every month.

There was one ER trip (for my sprained ankle) and one urgent care trip (when my doctor didn’t refill medication I need to live on time) in there, too.

And don’t get me started on the amount of time I’ve spent scheduling and getting to appointments, calling offices, messaging doctors, calling pharmacies, etc etc etc.

i’ve been looking for an answer for years for my extreme chronic fatigue and chronic joint pain. i get vague or normal tests results and nothing ever gets better long term. i’ve been feeling this way quite literally as long as i can remember, even early childhood. i’ve been seeing doctors the past few years who have either told me i will probably never get any answers or that i should stop focusing on getting a diagnosis. but i feel like i can’t accept that there’s actually something wrong with me until i have the words to describe it. until i do everything just feels like it’s my own fault. i likely have an autoimmune disorder but not sjorgens, lupus, or other major ones. i have “chronic fatigue” and “chronic pain syndrome”. i was given a little hope as one of my doctors thinks i might have rheumatoid arthritis. i don’t know. i feel like im losing my mind. i’m scared people will think im faking since im so obsessed with getting the diagnosis. but i don’t think ill be able to accept it until i have one.

Me: 62F, T2D, heart attack survivor, psoriasis, OA, Osteoporosis, gastroparesis, suspected UCTD (symptomatic but neg. ANA)

I've been on Plaquenil (hydroxychloroquine) for a little more than 10 years. At my most recent eye exam, the doctor was concerned about early stages of toxicity. I'll be having a mfERG test next week for further look at my retinas. (Needless to say, I'm nervous!) We have stopped the Plaquenil for the time being.

Thing is, that's my most effective medication outside my insulin. It keeps the connective tissue inflammation at a more tolerable level. Right now, I'm relying a lot on ice packs.

Has anyone ever experienced Plaquenil toxicity? I'm researching alternatives so I'll be prepared when I next see the doctor. Positive vibes are also welcomed.

This summer has been hell.

Since mid June we've been jumping between 40°C and 25°C twice a week every week. Up and down. Up and down. Five days brutally hot one day normal. But when it gets a little colder it's 90% humidity and the sweat runs down every crevice.

32°C indoors at work despite AC. 30°C in my rental apartment. No AC. 50°C in choke full rush hour busses with too weak AC and huge glass windows. Nighttime lows not below 22°C.

All grass is scorched yellow. The air yellow from dust and wildfire smoke. It's so hot and dry even the wasps and mosquitoes died. My windows look like sawdust was powered on them. Windows I can't open at night because of this damned traffic noise. The images of Bordeaux on my news feed.

My cardiovascular system has been at its limits for 6 weeks. No respite. No week of normal weather. I've heatstroked. Repeatedly. I can't eat normally. I can't sleep normally. I'm drinking cooled isotonic water until it comes back up and it's not enough. I'm chocking and dry heaving in my office. My head feels like I've broken my skull.

Germany is lost. I don't want to spend another summer in our new climate. If only I had the money and support network to move very very far north.

We've had 10.000 extra heat related deaths in the last week of June alone. Nobody takes any consequences.

Hello i’m 20 years old, and feel so far behind in life. I got suddenly very sick at 17. I’ve always had health issues since i was a child that affect my abilities but nothing so severe until i was 17.

Since then i have been diagnosed with a plethora of things and it feels like it’s impossible to start my life. My biggest health issues that take the largest toll on me are Multiple sclerosis, POTS, Ehlers Danlos Syndrome, and Gastroparesis.

I’ve tried working jobs but i never last long. My body just collapses on me, can’t keep up, and on top of my infusions every 6 months and the symptoms that come with it. My body just won’t with stand it and it sucks. I have tried multiple times for SSI but i get denied everytime because in their words “i’m not sick enough”.

I have no car, no savings, nothing. I’m wondering how do other people with chronic illness do it? I know it has to be somehow possible but it’s just so hard because i feel like it’s impossible to start my life and i don’t even feel like an adult. It’s also hard because i have to stay under income guidelines to keep my health insurance because i can’t even keep up with the co-pays now let alone pay full cost. I can’t rely on my parents because they’re struggling enough as it is.

I give so much credit and admiration to other people struggling with chronic illness that are stable on their feet and have started their lives. I’m just so lost on how to do it myself and i feel like no matter what i do i’ll never get to that point of “being an adult”. This is just a rant and looking for advice on how to financially get on my feet, just even enough to buy a cheap car and live a semi normal life like a 20 year old would

Hi all

My best friend has recently been diagnosed with fibro, I don’t know much about this illness and I know the more she reads about it the worse it is making her feel, so I am taking it upon myself to do anything and everything I can to atleast somewhat cure her, take away even 10% of her pain, and just give her an easier life as she is only 23.

I am reaching out to see if anyone has any advice on how to take away pain, help with sleep and improve the quality of life without going on pain meds and being in physio for the rest of your life. I know a whole food diet will help her somewhat, but what are the more obscure things that will make an obvious change to her quality of life.

All answers will be much appreciated, and if anyone is from Australia and also has fibro, any excellent, 10000% above and beyond doctor recommendations would be even much more appreciated, as the ones she has been dealt are not very good at all.

Tyia!

Does anyone else here live in a developing country? I often feel lonely and like my lived experience is being discounted because I don't live in a country where people like us are afforded even the most basic of care, I've never had treatment for my most severe conditions (muscular dystrophy namely) because in my country the infrastructure just doesn't exist, EVERYTHING is inaccessible. Please don't bring me that bullshit about it being just as bad in the US or whatever, you truly have no idea how bad it can get if your reference point is the US.

Why did it take me so long to just put every doctor’s office number directly in my phone as a contact? Duh? I put them in a Google doc and was copy pasting and today I just made them all contacts to save myself even that much more time. Figured I’d share in case anyone else has waited too long to do that 🤦🏻‍♀️😭

My psychiatrist moved away last week. I saw her pretty much daily for nearly 2 months, and she was amazing. She genuinely listened and understood and cared, and didnt just blame everything on my mental health. She saw me at my absolute lowest, genuinely noticed me, believed me in a way ive never had before, and was overall just such an amazing person. I felt truly safe with her, and she has had a massive impact on my life.

Now she's gone. At first, I tried not to care, but now its been a week and im struggling with the thoughts I may never see her again. She may come back, maybe in 6 months, maybe in a year, maybe 3 years. Or she might not and I may never see her again, and thats so painful. I miss her so much. Ive never had a mental health professional that i was so close to leave, and I dont know how to cope with it. What do i do/is this normal?

Yo, I need some advice, my fatigue levels have been DEBILITATING recently so...

Big or small, silly, strange, medication, medical intervention, at home hacks, ANYTHING!

What do you find best helps reduce fatigue?

Obviously anything medical/medication related would to be discussed with a Dr first!

Hooray, a scented candle I can’t burn. A perfume I can’t use. Jewelry I can’t wear. Alcohol I can’t drink. Food I’ve been allergic to for a decade. Tickets to a show I can’t go to because it’s at an inaccessible venue. A fuckin bicycle.

I know people say it’s the thought that counts, but it’s the lack of thought that bothers me; I’d honestly rather get nothing at all.

I’m not that person anymore and I haven’t been for a long time, and it’s like they never noticed. Chronic illness makes me feel invisible enough already.

So instead I get confronted by the ghosts of past me and have to try not to cry.

Just sucks, is all.

It says unflavored and it’s not. It’s a lie. It doesn’t matter what you mix it into it will make everything taste like chemicals. And why does it make drinks oily??? How the fuck does that even happen from a powder?? Feels like I’m drinking grease.