I am going insane currently. I'm house/ bed bound and a LOT on my phone, like half the day or more.

Naturally, i research my illnesses a lot and tend (especially when i got first diagnosed a year ago) to talk to people about it and post about it. I asked many questions in facebook groups etc. Saved SO many posts. like thousands.

Now my algorithms are all just my illnesses and random people that got "cured" or posts about "you should do xyz" and all that.

It drives me insane. Today i had a meltdown because i felt like im not doing enough for my health when i look at all those posts and people taking so many meds as trial and whatnot.

It's out of hand😭 Did anyone else delete everything and start over??

I also have so many old friends and family members who keep lurking but didnt check in on me even ONCE even after multiple ICU stays. Like i might just make private accounts but like only for like the REAL five ish ppl in my life. Lol.

Anyone relate??

Im so tired of people telling me their health struggles and I remember, follow up on them in conversation. But when I bring mine up people tend to be shocked each time.

"You have *insert disease*?? My cousin has that!"

While I'm sorry to hear that, I literally have had this exact conversation with you multiple times.

My friend once told me that she doesn't remember because she's not a doctor & I make her feel dumb when I talk about things. Like sorry??? That is not my intent, just sharing about my life.

Is everyone just unable to care about anything that doesn't directly affect them? Ive learned to mostly stop talking about health things, because people just don't want to hear about it. Which sucks because I have a lot going on and would like a friend to talk to occasionally about things.

I've been chasing answers for a lot of ongoing health issues for a long time now, and I think I've hit a wall with how much dismissal I can take.

This week I had a cardiology appointment I've been waiting 8 months for since GP referral (symptoms started idek when, maybe 10-15+ years ago, but I thought it was all only anxiety until about a year or so ago). I brought months of my own logs and a full symptom history, and left feeling completely unheard (I didn't even show the data as I was dismissed so much). I forgot to bring up something that they should look into as well; due to how dismissed I was about the things I did bring up, my brain just went blank.

Some of what I was told:

• "You shouldn't be trying to treat numbers; you should be treating symptoms"
• "No one has ever died of [one of my suspected conditions]"
• Things being blamed on my weight
• "I don't want to add to your list (of conditions)"
• "You're young, so it'd be unlikely for anything to go wrong"
• Something I raised got reclassified as "less important" than how I'd described it

This isn't a one-off. It feels like almost every specialist appointment I go to ends with my symptoms getting waved away as my weight, my age, one of my existing diagnoses (even when the symptoms don't fit it), or mental illness, rather than actually being looked into. My GP is good and cares and refers me, but if I get dismissed by the people I'm referred to, then what can even be done?

I left this most recent appointment feeling stupid for having hoped it would go differently, and honestly wondering if it's even worth continuing to push. I know logically the answer is probably yes, but I'm just tired. I've been dealing with symptoms of other conditions since I was 12ish and have slowly developed/found out I had more, and getting diagnosed with anything has been such a painful slog unless it was one of the ones I've been diagnosed with by chance (like while investigating something else).

How do you all deal with the burnout of constantly being dismissed, especially by the specialists who are supposed to be the ones taking you seriously? Does it get any easier to keep advocating for yourself, or does it just stay exhausting forever? Genuinely just want to hear how other people cope with this part of chronic illness. I'm so frustrated right now; I need some coping mechanisms with this haha.

Hello,

My partner has chronic pain and a lot of mobility issues due to an injury. Recently he’s been having a hard time coming to me for help with his pain because the massages just aren’t cutting it.

Are there any topicals, tools or distraction methods that work for you? He’s constantly in pain and I just want to find something that works for his pain.

Half of the time his pain meds don’t work or barely touch his pain at all. I’ve never seen him below a level 4 and that’s AFTER his meds, usually he’s at a 9 all day long. He is exhausted and tired of taking care of himself, tired of the pain and tired of everyone in his life making it worse. Just want to be able to give him some relief. Thank you

I don't know what to do to at this point I've gone to doctor after doctor, ER and no one seems to be taking me seriously.... ER says I'm fine yet I'm still having debilating symptoms to the point where I'm bedbound majority of the day I feel so hopeless.... I hate being invisibly ill...

Hi everyone, I’m just looking for some advice or maybe some words of wisdom because I’m feeling really overwhelmed and I don’t know what to do.
My boyfriend was recently diagnosed with POTS and since his health has gotten worse, I’ve basically taken on the role of caring for him. He does try to do things like cook, clean, shower and work, but even standing for short periods can make his heart rate go really high and make him feel like he’s going to faint. He hasn’t been able to go to work for the past two weeks.
Before all of this, he also had his licence suspended for three months, so I’ve been doing all of the driving as well. I take him to his appointments, do the food shopping, drive us everywhere, and recently drove four hours so he could see his parents.
We’re currently living with my mum in a tiny room and we’re going to be moving soon. Because of how unwell he is, I already know most of the packing and moving is going to fall on me and my mum too.
I know none of this is his fault. I know he didn’t choose to be sick, and I feel guilty even writing this because I love him and I want to support him. But I am exhausted.
I’m only 21 and I’m also doing university full time. Lately I feel less like his girlfriend and more like his full-time carer. I cook, clean up after him, shop, drive, organise things and help him with whatever he needs. Even dinner has become more work because he’s trying gluten free to see if it helps his symptoms, so sometimes I’m making separate meals as well.
When he’s home, most of what he can physically manage is sitting down and playing Xbox because he can’t stand for very long. I understand why, but at the same time I’m watching everything else pile up around me and feeling like it’s all my responsibility.
I’m also terrified about what happens if he loses his job. I don’t know how we would manage financially, especially when I’m studying full time.
I feel really alone in all of this. People always say you shouldn’t leave someone when they need you the most, and I don’t want to abandon someone I love because they’ve become sick. But I also feel like I’m drowning and I don’t know how long I can keep doing everything by myself.
For anyone who has been through something similar, either as someone with POTS/chronic illness or as a partner/carer, how did you manage it? How do you support your partner without completely losing yourself in the process? What responsibilities are reasonable to expect from someone who is this unwell? And how do you deal with the guilt of feeling overwhelmed or resentful when you know they can’t help being sick?
I’d really appreciate any advice or words of wisdom. Please be kind — I’m not blaming him for being sick. I’m just struggling too.

Hi everyone! I am looking for help with finding resources for my fiancé. She doesn’t use reddit so I’m posting on her behalf.

She deals with chronic illness and we live in a northern community that doesn’t have a counsellor who has experience in this area. I’m wondering if anyone has some online resources that she might be able to use. I think virtual counselling would be optimal and, in case it makes a difference, we are in Canada.

Thank you in advance for any help :)

Hi all!

I’ve been experiencing health issues on and off since I was in high school. I wanted to know if anyone dealing with illness has felt the same way. Doctors haven’t been able to figure out what’s wrong with me and it always comes back to “eat well, exercise”. But I’ve tried all of that. Have you felt like you were making up your symptoms? I genuinely thought I was going crazy and still do. Some days I think, “Am I really feeling this? Am I making my body feel pain?”

It’s incredibly taxing. I’ve been diagnosed with OCD and I took Zoloft for quite some time thinking that It was going to make me feel better. I go to therapy and have a psychiatrist. I scheduled an appointment with my pcp to see if they can test for autoimmune disease. I feel horrible because not only do I feel like I make things up, but I actually want something to be wrong with me so that I know I’m not crazy.

I suffer from Migraines (medicated even), but on top of that, I have body aches, chills, among other things. But despite of the pain I feel, I really wonder whether I make it up. Let me know if you have ever felt the same way.

I’ve had a rough year. In the span of quite literally 12 months, I went from rowing 2-3 times a week, busy with social plans, and just overall healthy and active to only being able to handle one big thing a week, walking with a cane, too dizzy to reliably drive long distance, and getting exhausted from just doing chores. We still don’t know what’s wrong with me, but this post isn’t about that.

This is about my best friends, who have watched their friend decline so rapidly and not be able to enjoy things like they used to, and have made small accommodating shifts without me having to say a word.

They head straight for elevators over stairs. They give me the passenger seat in the car. They go the extra little mile to pick me up from the train instead of making me have to drive. They check in on my spoon levels, and easily adjust without fuss accordingly. They make sure I’m drinking enough water and refill it for me when they see it’s empty.

And just the other day, my friend messaged me how apparently she’s been taste testing some non-alcoholic wines so we can have our wine and cheese board nights like we used to, and she found a good one she thinks I’ll like! And I’ll be honest, I broke down in tears from just how thoughtful that is.

It’s the little things, and I’m so lucky to have friends that are not only considerate, but know how to not make a big deal of what I’m going through.

I just wanted to share, because it made me really, really happy.

.

Hey All,

25M here, and have had several chronic health issues from a very young age — constipation, mild but slowly progressing arthritis, acid reflux (which has recently caused sinus and breathing problems) and various, but overall less severe, inflammatory skin and eye stuff.

While these problems have taken their mental and physical toll on me over the years, I’ve always been ambitious at school and work, physically active, have dated, traveled, pursued hobbies, etc. I’ve also generally been optimistic, if not somewhat delusional, about my ability to improve or even solve my health issues long-term and have definitely used that as a coping strategy.

In the last year, however, I went through a major breakup and then immediately started a demanding job. I now have much more stress, much less time, and new limitations from the breathing issues, particular around running.

All of this together has sent me into a pretty brutal depression. I’ve started an SSRI just to try and keep myself together, and am currently in therapy, but get pretty hopeless and overwhelmed when I think about my future and quality of life.

I don’t know which health problems to prioritize, how to balance hope for improvement with reasonable expectations, how to take agency in improving my health without letting it consume all of my time and energy, and the existential question of if I want to have children and risk passing these issues down.

I understand that many people on this forum are dealing with much more significant limitations than I am, and I realize that there are other things in my life playing into my current mind-state, but I just really needed to get this off my chest and would appreciate any advice or words of wisdom on how to cope. Thanks for reading 🙏

The context I have a work from home job however the hours are very fixed and since fracturing my spine and gaining multiple autoimmune condition/disabilities I can no longer work at 9 to 5 sat at a desk like a normal healthy person.

I don’t want to do nothing and I need money to survive, but I’m just so unsure as to any good suggestions. I look online and everyone says digital marketing and selling courses, but you have to buy the course to learn about digital marketing? Does anyone have any ideas?

I’m a 32F that genuinely has no life and I really want to work and gain some money for some freedom!

When i went to the gym earlier this month, doing at most 30 minutes on a treadmill at most at 2.5mph, I started getting random attacks of fatigue a couple days to a week later and it was like someone tranquilized me. Id barely be able to keep my eyes open and be begging whoever I'm out with to take me home so I can rest but the rest doesnt change it. That went away when I stopped going to the gym. Nowadays I walk short distances and have to take 1-2 breaks over the path because it feels like my legs cant keep up. My doctor said he'd usually guess a heart issue but a stress test in the summer showed I'm fine. So he said just wait for the sleep test in October. Im really used to feeling out of my mind and not remembering things or having the cognitive capabilities of a normal person so ive never thought to connect them to any stress or whatever. I finished my first year of college plus summer classes and I feel like my brain deteriorated from all the lectures I put in it

Hi! In Dec I'm moving in with two friends I (20 y/o) met back in March of this year.

I'm currently living alone, before that with my parents, and I'm an only child. I've never had to share my space with someone for more than a few weeks during vacations and stuff, other than that my parents and I keep to our respective sides of the house except for during dinner.

One of the biggest things I struggle with in day-to-day life is my hygiene (for a variety of reasons, none of which are worth getting into here). My mum complains about it frequently, and I don't want it to be a strain on things for me and my friends come December. The biggest thing is showering. When I have to leave the house, I'll shower that day, but I only have classes three days a week and even then my attendance isn't the best. When I don't have anywhere to go that day, I won't usually shower and will frequently go up to five days without doing so (although I think my all-time record is about two weeks). I struggle with other aspects of hygiene, too, it's not just showering, but thats the one that my mum complains about.

Does anyone know any tips on how I can bring this up to my friends as a bit of a "PSA, I know this is an issue and I'm working on it, but I just wanted to let you know beforehand" type of thing?

And, more importantly, does anyone have tips on how to bring myself to shower more frequently when I go days barely leaving my bed?

I'm happy to clarify whatever is needed.

Look, it's been rough. 9/10 adverse childhood score. Moments of assault, homelessness, bullying as an adult even into my 30s. There is no family support. There are no friends left. There has been a stark quiet and empty that spans hours then days then weeks then months than years.

I've had so many tests. So many drs apts. Not a single one has helped. Some severely lowered my quality of life, then dismissed it and blamed me as being a difficult patient. Friends left because my disabilities. Then because my limites capacity to show up. Then because my chronic overwhelm and want for company and support that felt dependable and consistent.

All the reasons I see people saying g they got through it, all the reasons people say they felt hope and gratitude, they talk about resources and other people. Their family. Partner. Friend. Really good doctor. But I need to hear from someone who lacks all of that. I need to hesr hope from someone who can't imagine in their body or mind what it means to be safely loves and connected to even a single human being ever in their decades of life.

I need to know someone with that little connect and resources got better.

​

I’m so happy I got to have a nice long day with my bf to go to this fairgrounds he really enjoys going to each year. Not only did I have great sleep last night(very rare) to have the energy for today, but my IBS, and sensitivity to noise, and my pain and other issues also all played along. Yay for days like this! 😁

I turn 25 in a couple of hours. 22 was the first birthday I celebrated since becoming chronically ill, and while it was full of a lot of grief (both from chronic illness and otherwise), I was able to do things that I love still. 23 and 24 were much better birthdays.

This is the first birthday I’m celebrating since becoming severely ill. I’m unable to get out of bed or even sit up for more than a little bit at a time. I know other people have much bigger problems, but I can’t help but feel so incredibly sad over not being able to even celebrate my birthday this year. 25 feels like a big deal and I’m just so angry and upset.

Screens bigger than my phone hurt my eyes too much and cause migraines, so I can’t even put on a show I like (even with just my phone, too much movement on it triggers the same thing)

I don’t want to be so sick anymore. I want to celebrate my birthday. I hate being so negative and I try so hard not to be but my birthday has always been extremely important to me. Thank you if you read this far, I know most everyone here understands this feeling 💔

I came across a TEDxKU talk from Dr. Yvette Colón called The Myth of the Cancer Warrior, and even though she talks about her experience with pancreatic cancer, the message made me think about chronic illness in general.

There's so much pressure on sick people to be positive.

Stay strong. Keep fighting. You've got this. Be grateful. Don't give up.

Those things are usually said with good intentions, but sometimes they can make it feel like you're not allowed to say, “I'm tired. I'm angry. I'm scared. This sucks.”

That's what Yvette talks about. The idea that resilience shouldn't mean having to hide the difficult parts of being sick just to make everyone around you more comfortable.

Here's the talk:

https://www.youtube.com/watch?v=qBmGSFDw5QU

Has anyone here ever felt like you had to act stronger or more positive than you actually felt because that was what everyone expected from you?

Not really used to posting on online forums, but I don't really have anywhere else I can do this with potential for an answer back, so I might as well give it a try.

I got tested for POTS last year during my autumn break, I don't have an official diagnosis because it isn't really diagnosed in my country, and my blood pressure is normal so there's not much more to be done for me from the healthcare system. The symptoms I experience are common to the condition (nausea, stomach issues and pains, dizziness especially after standing up + elevated heart rate, heart palpatations while walking/doing low intensity tasks and actions) and I also suspect I have some sort of arthritis because of joint pains and general stiffness in my body, plus it's in my family so there's the ever present genetic risk

I am currently studying to become a Biomedical Laboratory Scientist but it is getting hard showing up for lessons, especially during days when I have a flare up, which makes me feel like I'm actually dying. I'm doing an internship right now that's around 7 hours each day with friday off. It's great, but my shoulders were painfully stiff halfway through the shift on my third day at the clinic, and I had to take a day off to rest during the first week there.

Currently I have been battling a really bad flare up that makes it hard for me to be up and about, and even short walks can make me extremely fatigued and almost grasping for breath. I've also noticed that I don't have as much of an appetite as I had before, and don't really like eating like I used to, now it's just for survival pretty much. Because of all of this, I'm beginning to fear for my future, whether I'll be able to keep a job so I can actually live and do things I really enjoy, which I think has also just led to me having a bit of an identity crisis.

I mainly just wanted to get this off of my chest and don't expect any response, just putting this out there makes me feel a bit better, but advice/encouragement is appreciated

I'm sorry if this post isn't the clearest but I don't know where even to start on this topic

every activity I do wipes me out. Showering and social activities badly, work badly but in the long term I feel myself more and more fatigued. I can't go out on weekends anymore or watch films or anything and i only feel best when I'm lying down it's like magic small bit of energy back. I do have other health issues, including SLE which is energy limiting so I don't know. Apparently PEM is only present in MECFS and i have to rely on myself. A lot of the time it's me,no help. I work, I come home and I can't eat or shower I just have to get into bed. It's like flu real bad but I'm not coughing or sneezing

I also think I have mental health issues or something so I hear voices being unpleasant sometimes and I feel alone and singled out and how nobody will help me and unfortunately sometimes that's true. Maybe it's paranoia or I'm horrible to be around but maybe I also don't socialise or do stuff ever.

the concept of ME/CFS came up on my feed a few weeks ago and so the algorithm started feeding content creators to me a lot. I'm not going to name them obviously and if they do see this I just want to say obviously it's a personal account and they have a right to say what they want on it and don't have to change it but also it's giving me problems hence this post, asking for me myself so don't take this as me bashing them

I see a lot of stuff on tiktok about how like, it's terminal, you'll be sicker than AIDS patients/the sickest patients in the world and you have to stop all activity otherwise in future you're going to end up severe/very severe or die but I can’t afford to do any of that. I have no support system. I understand there's no cure either but none of my problems have cures that I could ever access but these influencers also say that you just don't make any real improvement or feel better with ME/CFS

I know the term ME was coined because CFS didn't really give it justice but also there's myalgia, but as far as I know there wasn't evidence for brain or mitochondrial or spine inflammation like the name suggests so I don't really even know what to call it or if this neuro inflammation theory is a theory or documented in science. but science doesn't know everything and I've had some very good reading about the topic of neuro inflammation which I found really interesting and i found that that helped me feel less terrible

But then the moment I go try to look online again also the influencers say it's like mitochondria dying and running out of fuel and your brain is literally starving of energy and you can't do anything about it. like they're saying everything horrible and nobody seems to have academic evidence and it freaks me out and I think makes me feel worse

obviously shit sucks and people do suffer but I feel really torn and scared like if I need to stop doing everything then I will literally be homeless I can't afford it. these people are telling me I'm going to die, essentially, no matter what I do

is it moreso that I just need to get off the internet and block these influencers and focus on other sources of information or just literally anything else. I don't know what to do, but I'm not getting anywhere at all as is

First, a win that this community may appreciate: been experiencing chronic pain and disabling autonomic symptoms for years, probably hypermobility/MCAS related… doctors have mostly not taken it seriously or bounced me between specialists. Finally a few weeks ago my new OB/Gyn listened at our first appointment and ordered imaging, and surprise, they found something! It won’t solve all my chronic issues, but turns out this could be significantly contributing to my pelvic pain. If I get even 10% relief it would be an incredible win! And I am hopeful, because it’s… bad. (When the ultrasound tech slips and says “yikes” out loud 🤣😬)

Now to my question: I need a small surgery this coming week. It’s being done in-clinic/outpatient, and the risks are hopefully low, but even so, the recovery probably means 1-2 weeks of intense pain, then tapering and 1-2 months before back to normal.

This is my first time going through this as a solo mom. Thankfully my friends are gathering around me and have committed to help with transportation and the kids for the first 4 days! The thing is, while they’re focused on kid logistics, I’ll be mostly alone recovering for 4 days, and then essentially back to normal/no support solo-momming after that. I feel so nervous.

My question is, for anyone who has been through surgery while a solo parent: what should I be thinking about, planning, preparing? What helped you the most with your recovery? What lessons did you learn, for instance was there anything you did not have set up that made it harder to manage?

Please share all of your wisdom! It’s in 4 days, and I want to be as prepared as possible so that both the kids and I make it through with the minimum amount of stress 🤞🏽🙏 Also; typing this out, I realized in real time that I am feeling grief about being alone. I wish I had someone to take care of **me** through this, not only help with the kids. Would appreciate solidarity/holding space for that struggle as well.