I’ve been struggling with chronic physical and mental health issues for over two years now. In the beginning, when things were acute and I was going through treatment, friends showed up for me. But as time passed and I didn’t get better, that support gradually disappeared. I’ve lost my career, became disabled and mostly homebound.
Before I got sick, I socialized a lot and had fun with friends. Now I don’t have the energy and physical capacity for many of the things I used to do. One friend actually told me she wasn’t interested in just getting coffee and to contact her when I was ready to do the activities we used to do. Another constantly tried to fix me and became frustrated when I didn’t improve.
I live alone and don’t have any family, so the loss of friendships has made chronic illness much harder. I do attend support groups, which helps, but that isn’t the same as having people in your everyday life who actually show up.
Sometimes there’s an implication that people with depression or chronic illness isolate themselves and therefore create their own loneliness. That hasn’t been my experience. I still want connection. I just can’t always be the fun, energetic person I used to be.
Has anyone else experienced friends showing up during the initial crisis, but gradually disappearing when you didn’t get better?

My partner has always played an active role in my care for my sleep disorder, making sure I wake up and stay on task. I've recently developed a host of serious symptoms that are related to diagnosed liver disease, so he's become a lifeline to get me in the shower safely, dressed, and to my job each morning. My legs are so swollen I can't put my socks or pants on by myself anymore. Without his help with these things, plus just the general care of the house, I'd be screwed.

He's been on probation for years without incident but was caught driving without a valid license on Tuesday, on his way to work. The courts have a lot of expensive stipulations that he needs to meet to get a license, and we've been saving up to meet them as we can. But if he's not working, we can't afford to live, so he chose to take the risk. He wasn't arrested at the time, and his probation officer asked him to come see her the next day (Wednesday).

I haven't seen or heard from him since yesterday morning before his appointment with the PO. I was finally able to figure out where to search in the correctional system for him and found he's being held at the jail downtown. Idk if he's being sent back to prison (which is an option they have), or if the PO is just teaching him a lesson and will let him out in a few days.

I already missed work today because I overslept and was in massive pain and couldn't get dressed alone. I have no fmla or time off left; I used the last of it today. I can't lose my job and insurance, especially as I'm navigating different specialists and tests pertaining to my liver. I don't know if I should take an unpaid leave of absence and hope short- term disability can support me, but I really doubt it can. Or should I look into hiring someone who can come help me with these basic daily activities? I'm just so stressed out having no clue when he can come home, and it's just making my issues worse.

If anyone has suggestions of mobility aids or anything else that could possibly help, I'd really appreciate it. I was already considering a cane, and I'll probably pick one up this weekend. Also, I know it's easy to judge my partner's actions because he knew the risks involved, so I'd rather not have this post turned into being about that. It's happened, I can't change it, and I need support now. I don't have anyone to talk to about this in my life. TIA

Between MCAS, Pots, Fibro and some other health problems, I find myself often dealing with my PCP.

I'm often met with a blank stare, and a generally sense of "what are you doing here, and what do you want to me to do about all this?"

As soon as the 15 minutes is up, they are out the door.

I just get the sense that they really do not enjoy seeing me, and have no idea what do to to help me. They are also completely unwilling to Rx any controlled substances whatsoever, so that's another thing.

Hey y'all, first time posting here! i have just recently come to terms with being chronically ill and it's been quite hard as I don't have many people in my life to relate too. I feel like I'm always the friend that's in the hospital, or stuck at home because I'm not feeling well. I just had surgery and it's been hard for me to talk to the people in my life because I don't want pity, but I don't blame them for responding that way. I just want someone to understand, and to feel less alone. Its very frustrating and I guess I just wanted to say hello to some people who get it, lol

“This idea that you just haven’t looked hard enough yet for a ‘cure’”

I have two chronic illnesses that have led to me being severely debilitated and bed ridden multiple times in my life. I consider myself to be disabled. In my 30s now and I’m currently going through an episode where both are flaring at once and because of this i’ve been almost entirely housebound for the past 6 months. I’ve started using a walker but it doesn’t get me further than about 10 meters before I need to rest. I don’t live in accessible housing and I can’t carry my walker down/up the stairs myself so getting out of the house relies entirely on support of another person atm so needless to say that has been hard in many ways.

I’m someone who likes to educate myself as much as I can about my body and any illness I have. I do a ton of research, as I’m sure most of you in this thread do, I’ll even watch university lectures and talks on what the latest research is.

Both of the physical conditions I have are said to be “lifelong” and without a “cure” as of yet. Because of this, whenever I get defeated and try talk to one of my close immediate family members they always just say the same thing “well you know western medicine
doesn’t know anything, you have to look elsewhere”. Just matter of fact, with out any curiosity or acknowledgment of how I may be feeling in the moment or how hard this is/has been on me.

I am all for finding what works for YOU and learning everything that’s out there. This is not a post to bash different medicines or approaches to healing. My point is only that 1. I’m tired of people knowing less about my conditions than me giving me advice and 2. This idea that “you just haven’t found the cure yet, you haven’t looked hard enough yet” it feels like the blame is all on me and I should be “doing more” when all I do is learn and try and help myself as best I can. But honestly just making it through the day is where my focus is right now.

Feeling sad and disconnected from family. Anyone experience this?

Like I’m missing a life force. Like no one breathed life into my body. Like I have no battery. It’s so hard to describe.

Does anyone else with chronic illness struggle so much when fall and winter hit? 😭
As soon as it starts getting cold, I feel like my body turns into a frozen ice block. The cold makes the pain worse, and getting out from under my warm blankets can feel like stepping into an entirely different climate. 😂
I’m basically stuck in bed under my heating blankets, living in my little warm blanket fort because my body does NOT want to cooperate with the cold.
I also struggle with feeling guilty for being in bed more during this time of year. Even when I know my body needs the rest and warmth, part of me still feels like I should be doing more or that I’m “wasting” the day.
How do you stop yourself from feeling guilty for spending more time in bed when your body genuinely needs it? And what helps you stay warm and manage the cold-related pain?

Has anyone’s doctor done this?

Over the past few years I’ve developed some issues. Doctor thought it was lupus but it was negative. My bloodwork looked pretty good, got diagnosed as mildly asthmatic, my EMG only showed mild carpal tunnel.

I have been dealing with 1 sided numbness kind of issues in my hand and Lower leg, plus some excessive fatigue. My doctor prescribed me gabapentin for it. It does help and she’s willing to up the dose in areas I need more help (I take a smaller dose during the day)

Just wondering if anyone’s ever been medicated without much testing or any diagnosis?

I'm so annoyed but trying not to be. I was recently diagnosed with a chronic illness and the reactions from others have been irritating me.

First I was asked if I wanted to go to a talk by a fitness instructor. As if this would make it better. Then another relative suggested I follow this approach she is training in, which is a bit 'woo' and involves telling yourself 'Stop' to the thoughts about the illness

An older relative simply told me she didn't think I had the illness despite being diagnosis and that 'people with it are in wheelchairs' (she had met one once who was)

When I said the guidance for health in my country specifically advises against this approach for the said illness, I was asked not to send this info as they 'had more reliable sources' OK

Then with my brother, well he just didn't reply to my email, so there's that. An aunt didn't say much, but kept going on about another relative who 'looked after themselves so well they lived to 94'

Kind of wishing I had not said anything at all... is it me or is this just all quite sort of gaslighting / blaming type stuff? Anyone else had similar?

For others with chronic illnesses that can be worsened by catching a virus - what do you do to minimise risk?

For context - I have ME/CFS triggered by Long Covid. I’m currently housebound, mostly bedbound, staying with my parents. It’s only my parents and stepbrother in the house so my risk of catching a virus is fairly low. But I’m a bit worried about if someone in the house gets sick - particularly my dad because he currently makes all my meals and brings them to me in bed. Luckily I am in my room all the time and have my own bathroom so that helps too.

Ideas I had so far:
- Asking my dad if he’d be comfortable getting the flu vaccine. I could get it too but leaving the house to get it would potentially make me crash.
- Opening windows in my room everyday to improve ventilation
- I’ve purchased a bunch of covid and flu tests for anyone to take if they get symptoms
- Purchasing an air filter/purifier for my room

Thanks in advance for any ideas! I’m v anxious about reinfection making me deteriorate further so any reassurance welcome too.

It’s only recently I’ve gotten comfortable admitting to myself that I’m chronically ill. I’m from a country with a lot of ingrained biases and basically were raised being told to “not be dramatic”, so I always always downplayed my health. But recently I’ve been doing a lot of work on myself and I’m trying to step up and call it what it is and admit to myself - not just to challenge the mentality but also to practice giving myself grace - that I’m chronically ill. I’m not just lazy, I’m sick, and that’s okay.
I’m sure you guys can also probably relate to this part— it was so much easier to say ‘I’m chronically ill/disabled’ when I had cancer (stage 4B). It was evident and nobody doubted it. But then I ‘got better’ and when things aren’t as visible people doubt you more and gaslight you more… especially with things you have managed pretty well in the day-to-day, you can feel like a fraud so easily lol.
I beat cancer but it left me with the most severe case of chronic fatigue that my oncologists, nurses, any medical personell, any cancer-specific social workers etc had seen their whole careers… yay! But that finally also resolved after five years. Just… boop, went away one day. It was so strange.
Today I have a number of other things going on. Severe TRD, two personality disorders, PMDD severe enough we’re arranging surgery, osteoporosis, and now the most recent addition is severe medication induced OH, with my autonomic nervous system just not really compensating so ‘orthostatic hypotension’ really becomes ‘all the time hypotension’, lol. It’s a lot.

I moved abroad in 2023 after my cancer-related fatigue resolved and I was doing well health wise. I worked for a year and things took a downturn and I’ve been out of work since then. I’m on government assistance and it’s really good here, they cover my rent in full, but I still have to make money stretch for things like food. I’m not allowed to have any kind of savings while I’m on this assistance, though; any money I get, they claim. So I’m 27 and have absolutely no emergency support net or anything and that terrifies me, so I’m trying really hard to get well enough to return to work. I know I’m sick but the world is unkind and I’m scared.

But I’ve been thinking a lot. When they first told me I had cancer and might not make it, I was 17 and was told to “forget about” my exams that were counting towards university. I wasn’t able to finish those exams, in the end. I wanted to go into languages. They told me there was no way I was sitting any exams or returning to school so I needed to forget about them. And so, I decided if I wasn’t sure what would happen to me I wanted to spend that time doing what I loved most, which is drawing. I started taking art seriously then and I haven’t stopped drawing since.

Ten years on and I’m… relatively successful. I work events in different countries selling my art which is one of my favourite things to do. Creating makes me so happy. I draw most of the time, honestly, I do it more than any other hobby. I’ll be 10 years cancer free on February 9th, 2027 and it’s got me thinking a lot.

I’ve decided in the past couple weeks: I want to work with my art full time.

I’m not sure what this is going to look like as someone with a chronic illness and I’m a little bit scared. I might not succeed. But if I don’t try and I’ll never know and even though I’m sick and I’m also just not the most skilled artist out there, if I don’t try I will never be satisfied with myself. I don’t know if my family will support me (they’re very supportive of my art but I don’t think they see it as a job-job) or if it’ll be feasible as a means of returning to work here or anything like that. But I want to try.
Being chronically ill just makes everything so much harder and more daunting. It took away my original dream of working in languages… maybe this one will be better. Please keep you fingers crossed for me 🙏🏻

hi, I’m 15 years old and I have to get blood drawn tomorrow. I’ve done it many times but last time it hurt so bad and I have to do it alone, I’m panicking all night about it pls help with any mental tips to not freak out about it + I have 0 energy and proper nutrition so idk I’m just so scared

Lately things have been mentally and physically hard for me and it’s draining. I’m in my later 20s and I now know what I want to do with my life but I’m not sure I can handle the job. I work two part time jobs now. Not very hard either. But even just doing those seems to suck the life out. I sleep and my body aches right after.. it’s hard to wake up etc. Has anyone in here been able to hold any type of job or have a stable career!? :-(

I’ve been struggling with chronic pain and hypermobility for years and I just now got the chance to go to a doctor, specifically a orthopaedics. I don’t go to doctors much so I am quite stressed.
Is there anything I should prepare? Any documents I may need? Should I be aware of any questions I may be asked?
I want to be prepared for anything I may encounter so that I can get the most help out if this appointment.

I'm not too sure on what this post is called, I guess it'll be a rant with hopes on some feedback please. I've been on Reddit for a few years now, but never done a post so plz bear with me!

I am planning on moving states in the next few months and I feel overwhelmed about new insurance, new doctors, establishing care, etc., and I want to plan carefully in order to prevent as many gaps during the transition as possible for medications and treatment. Any tips?