So I asked for a mini fridge for my room cause I often have days where I cannot leave my bed but like I had to do like loads of work and get it like a "reward" and the same with a few of my mobility aids, is that fair?
im not sure what to do. i am in my late 20s and not doing well. i have no career and every job seems to end the same.
the more this happens to me the worse i feel. i feel socially not just physically disabled too at this point. my job went all in on A-I and its so scary how most of us can be automated.
i went to college and did amazing in school. had internships, hobbies and never was without a job, but - it took me three years and thousands of applications after college to get an entry-level coordinator role related to my field, and I've been made obsolete and auto-mated. there is no role for me anymore, despite expressing desire to join another department. i don't have the skills to navigate the corporate layoff world.
In the spring, my thoroughness, attention to detail and deep execution were high-value assets. i was told how good i was at my role, given glowing but VAGUE praise and performance reviews. When leadership brought in new workflows and dedicated resources to automate my processes, they fundamentally redefined what they considered "valuable" even as i helped build the systems that are now in use.
I keep getting "quiet fired." whether the job be 6 months, 2 years, 3 years - things start going downhill quickly and the rules are different for me as soon as they "clock" me. It doesn't matter if it's high-stakes corporate or fast-paced hospitality. the blueprint is always identical, and I feel completely bullied and powerless.
In my current corporate job, I am actively being iced out. I get removed from meetings without explanation, stripped of project scopes, and monitored under the microscope. But when I explicitly ask management for constructive feedback or ask what I can improve, I get nothing. Or worse, generic, fake-positive praise ("You're doing great!") right before they pull another duty away from me.
Trying to do high-level work while constantly defending your right to exist at a company takes an unbelievable toll on your nervous system. I am being pushed towards more manual labor that's getting automated even as I fight to stay in the strategy, EVEN as I am being removed from context. I feel that I am drowning in quicksand. Every day feels like walking through a minefield.
I realized that this exact same thing happened to me years ago when I worked as a bartender. Management wouldn't just give me feedback; instead, they'd start subtle, passive-aggressive ostracization. A few servers eventually admitted they felt terrible for me because our bosses were literally telling the staff behind my back, "Go to the other bar to pick up your drinks." I was the last to know I was being frozen out.
It makes me feel crazy and hopeless for any sort of career or my future working. The pattern I get met with in work environments is subtle social exclusion, passive-aggression, and corporate double-speak. People won't just tell me what the problem is to my face, they just quietly make the environment unbearable until I either break down or get let go. it really sucks that I clearly do well enough to survive 5 and 6 round interview processes, and present well enough initially that people sign me onto their "work family." but it always breaks down.
it feels like no matter how hard I work or how good my results are, I always end up being the person everyone silently decides to push out. i feel like the biggest loser.
and for starting a business, im just out of ideas at this point. ive done petsitting, babysitting, offering event bar services, online etsy shop, nothing has worked. outside of being ND i have pots, endo, pcos, migraine disorder, N24 sleep disorder, chronic pain, scarring disease, multiple autoimmune diseases. im so burned out and feel shot.
it feels like the current layoff economy is now "clocking" out people like us. what are we supposed to do?
I’m so incredibly, terribly lonely. The last two years have been fucking horrible. I’ve lost 95% of my friends, my girlfriend, really any support system within 1000 miles of me. I spend almost every night alone eating take out because I can’t cook and doing anything I possible can to not let a single thought enter my brain.
When I finally do get brave enough I invite people to play games, come over, go out (when I can) constantly and nobody has ever said yes. It’s like in a leper. They tolerate me when they absolutely have to, but anything outside of that I might as well not exist.
I hate this, I just want to scream and claw my hair out. I’ve started self harming, I look like I’ve been attacked by something some days. I’m crawling on the walls and starved for connection, but who wants a friend or god forbid a boyfriend who is this sick and has this many issues?
I swear I used to be fun. I used to have friends, and a community. Now I’m a fucking robot who’s praying he runs out of power and doesn’t boot up in the morning.
I don’t necessarily have mobility issues or pain, but I do have problems with fatigue. Frequently, I struggle to do household chores because I just can’t stay standing or walking around that long. Sometimes I can bring over a chair, but for something like cleaning, I need something that can move around. I don’t want a full wheelchair because my apartment is fairly small and I think it would be really difficult to maneuver in this space.
I’ve been thinking about getting a shop stool or something but I wanted to see if anyone here had any recommendations. I want something on wheels, preferably with adjustable height, that I can sit on and move around on (my legs work fine so it’s okay if it moves by just pushing myself around with my feet).
PCP's won't prescribe pain medication but they also won't order tests that would help diagnose what's causing the pain. I don't know what to do. We've seen 2 doctors in less than a month and they both said exactly the same thing.
My Mom hasn't had her 2 brain aneurysms checked since 2022 and she's been having severe headaches for 2 years and no one will order an MRI/MRA. We got told no again today. She said to wait until the neurologist appointment in January 2027. Now she has zero pain medication and is in constant pain from her head to her toes 24/7 and can barely use her left arm. She's constantly wincing in pain. I'm suffering watching her suffer. I feel like I'm in an alternate reality where everyone is like those emotionless pod people from that movie.
Any advice on how I can get my Mom's condition diagnosed before next year so she can get on the right treatment plan and we can hopefully fix whatever is wrong or at least manage it?
Thank You. Please be kind. I am an emotional wreck right now. My Mom is holding up better than me.
Waiting for test results. Waiting for specialist appointments. Waiting for insurance to approve treatment. Waiting for a diagnosis. Waiting for symptoms to get better. Waiting for symptoms to at least stop getting worse. Waiting for doctors to call back. Waiting for someone to believe you. Waiting for your life to start again.
I spend so much of my life waiting. And the waiting isn't passive — it's active, exhausting, and consuming. It's checking my phone every five minutes for lab results. It's being unable to plan anything because I don't know what tomorrow will bring. It's being stuck in limbo, unable to move forward, unable to go back, just... suspended in this strange space where everything is uncertain.
The waiting takes up more of my energy than the illness itself sometimes. Because at least with the illness, I know what I'm dealing with today. But the waiting? The waiting is the unknown. And the unknown is terrifying.
I think people without chronic illness don't understand how much of our lives is spent just... waiting. For answers, for relief, for permission to be taken seriously. It's its own kind of exhaustion. The kind that never ends. The kind that keeps you stuck in a life that feels like it's on pause while everyone else keeps moving forward.
I've been sick for a while now. Years, actually. And for most of that time, I told myself it was temporary. I told myself I just needed to find the right doctor, the right treatment, the right answer. That once I figured it out, I'd get my life back. That this was just a chapter, not the whole book.
But lately, I've started to realize something that terrifies me: what if this isn't temporary? What if this is just… my life now?
What if the pain never fully goes away? What if the fatigue never lifts? What if all the things I thought I'd do "when I get better" are just things I'll never do? What if I'm never the person I used to be again?
I've been carrying this hope for so long. It's what kept me going. It's what got me through the hard days. But now I'm scared to let go of it. Because if I let go of the hope of getting better, then what's left? Just acceptance? Just learning to live with less? Just a smaller, quieter life than I ever imagined for myself?
I don't know how to grieve a life I haven't fully lived yet. But I think I need to start figuring that out. Because the hope is starting to feel heavier than the acceptance would.
I’ve been dealing with health issues for the last 5 months and have continued to get worse, I left university around April, which is when these issues started and I go back in a week feeling worse, I’m honestly so scared on how I will manage uni on top of all of this.
I have symptoms such as fainting at work, vommiting and a 25lbs weight loss essentially a full body shutdown I feel so dead. I wake up feeling like I got hit by a truck. I’ve ruled out most structural issues although I’m waiting for a CT scan in December on Christmas Eve. Honestly it’s crazy to me if you don’t have life threatening organ failure then it’s just waiting on waiting. Once you start having these major issues then you get proper treatment but I think a crucial part of where this system fucks up is leaving the patients who have chronic illness or autoimmune conditions out to dry. Often times those types of patients will be more likely to develop something more severe down the line due to the symptoms not being managed properly. I think my main issue is doctors not finding the root cause along with the entire system not being preventative what so ever.
I'm a 26 year old female and I live with severe neck pain. When I was a little girl, I fell and broke my neck and my collar bone. Over the years, arthritis developed in my neck and multiple herniated disks. By the time I was twenty two I ended up becoming disabled due to the debilitating pain. I forced myself to work a manual labor job because I couldn't get an office job. I live in a rural area where there's barely any jobs and I couldn't afford to travel. I got this job even though I knew I shouldn't because people in my life kept telling me I was lazy. I regret that job more than anything. Because it made things a 1000 times worse. Then they were before. Now I can't work at all. Sitting down in the same spot for too long makes the pain worse. I have to take breaks, doing basic housework due to the pain, and if I overexert myself, I'll be in severe pain for weeks. My pain can go from a 4 to a 9. My sister, who is fully able-bodied, and healthy was the one telling me these mean things and making me feel like garbage. But she actually doesn't work, and has never had a real job in her life and mooches off of others. My grandpa has also made ableist comments about how im too young do have all these problems, and so has my dad and it makes me really sad that they think i'm exaggerating, and don't seem to understand. To make matters worse, whenever I mention something about my disability on the internet outside of parts of the internet that are for disabled people or chronically ill people I get a whole bunch of trolls, calling me mean names.
Like the title says. I feel extra sick or sicker than usual and I don't know why. Also, I had an appointment today AT 8 AM! 😭 it was absolute hell considering I only slept 5 hrs last night and I had to cancel my PT appointment to tomorrow. Sigh. I hate this.
What have y'all been doing today? Anything interesting, fun, boring, etc, I'd love to know! Just want some company!
Content Warning: >!mentions of nausea, vomiting, diarrhoea !<
Some backstory (warning a bit gross):
>!For the past 9 years I have been having daily nausea, vomiting up to 10 times, chronic cough, fatigue, dizziness, migraines and for the past year diarrhoea was added into the mix, usually 4 times a day minimum. Waking up every single morning for 9 years running back and forth to the toilet has been hell, I hate nausea, I hate vomiting and somehow it still has me crying even after all these years of repeated Groundhogg Day hell lol.!<
Initially when this all started 9 years ago, after all the testing: bloods, stool, ultrasound, CT, endoscopy and colonoscopy, they said it was caused by stress. No treatment options besides the stress management I already do as a generally anxious AuDHD person, and it kept going and getting worse everyday.
Fast forward to today 9 years later and I've just finished my follow up appointment with a different Gastroenterologist. I have been officially diagnosed as having Disorders of gut-brain interaction (DGBI)! Something that has treatment options!
I have a medication to trial and a referral to a gut-brain psychologist (I didn't know they existed, but gut-brain hypnotherapy is a thing, how cool!).
The Dr reassured me that it is not in my head, and is a pathological condition. This was very validating to hear.
I am just so relieved, I really hope these options will bring some relief from this daily nightmare cycle!
My wife has been diagnosed with hEDS and for the past three years she has been plagued by chronic and debilitating back pain.
We have seen numerous specialists and consultants and spent a fortune on private medical care. And overall nothing has improved.
Nobody has even been able to give us a concrete cause for the pain.
We have done our own research and been dismissed by doctors and we have tried so many at-home remedies I’ve lost count.
When we got married I told her I would support her and protect her and I don’t know what I can do anymore.
We have tried the following with no success:
- facet joint steroid injections
- radio frequency denervation
- epidural steroid injections
- medical marujana
- opioid painkillers
- low dose naltrexone
- chiro and physio
- a spinal cord stimulation, implanted in November.
Now her consultant wants to remove the stimulator because she is struggling with recurrent infections around the site of her battery.
Everything else has failed or worked for a short period before she becomes tolerant of whatever it is.
Opioids interfere with other medication causing problems of their own.
I truly am lost for ideas.
Our only remaining options appear to be colossally expensive and not achievable for us.
Any advice would be welcome and thank you for taking the time.
EDIT: We’ve noticed that movement and exercise will cause recurrent abscesses and infections around her battery site so physio is a difficult area at the moment.
im a chronically ill woman who lives in chronic pain. i've posted about my job search in other forums, and i get told the same advice, usually from men:
im sorry that my DIAGNOSED cfs, pots, pcos, endo, migraine disorder, audhd, N24 sleep disorder, MCTD, IBS, scarring tissue disease, and laboratory confirmed chronic bartonella (persister cells) does not allow me to do any of these - except start a business, and even then, starting a business doesn't magically earn enough money to get a chronically ill / high medical needs person independent. i've started multiple businesses such as petsitting, babysitting etc and nothing has earned me regular income. Before my health issues I worked multiple jobs and 40+ hours per week until my health literally collapsed a few years ago.
it really sucks that the ableists have taken up the majority of available remote jobs, because that would be how i am able to participate in the economy. i'm about to be laid off again and i see no future and im so burned out. im in my late 20s and cant see a life like this.
if you say you're looking for hybrid or remote work on r/recruitinghell r/careeradvice r/jobs you get told you're entitled / delusional / asking for too much and if you disclose you're medical issues you'er a #complainer, a #liar and told to #suckitup when i've lost every job ive ever had that required to be in person 5 days a week.
truly at a loss in this economy. the united states creates chronically ill people and then casts us off and we are left to die. if i had no parental support i would not be alive today.
Unsure is this is the correct place to post but I assume you guys are the right people to ask.
I just want to find out why I hurt, how to fix it, and get better so I can move on with my life. But I always get no where with doctors
I've been dealing with pain and fatigue since I was 14 (turning 20 this year)
This year has been especially bad, especially the last few months being that the pain has not let up once, I'm in pain every single day. It's destroying my life.
But pretty much all I can get out of my gp is blood tests even though they never change. Never, my blood test results have been almost identical since I was 14. They never find anything.
I called them up to ask for results of one earlier this month and got a very mumbled phone call where the doctor brought up an unrelated issue first despite me requesting my blood test results I had to tell her repeatedly it was unrelated to the issue. Only then did she tell me they (as expected) found nothing. Them mumbled so heavily I had to ask her to repeat everything a bunch before BEGGING (she was literally fixated on this) that I get another blood test done just so she can have updated readings on my vitamin D (something that's low because surprise, I'm in too much pain to go outside🎉) and the way she spoke about it made it honestly sound like it was unrelated to the issue and just wanted to see if they gine up for her own personal whatever. The call ended with no progress, I had another blood test done last week, and I am going to request results tomorrow but I know what the results will be.
Idk what to do anymore, I've lost hope that I will receive help, my mental health is the worst it's ever been. How do I get them to listen, how do I get action??? Genuinely are the stupid? Are they that reluctant to do anything??
I am tired and I don't want to keep fighting this anymore,it's been on too long and I've been doing It all alone
I have an umn disorder,or enough signs/symptoms it's realistically nothing else at this point,it's like cerebal palsy I'm very spastic and tight but it's progressive (eventual paralysis)
In all 4/5 years of this getting worse,me mentioning my injuries and showing up with bruises,cuts and scraped not one GP has self initiated ANYTHING
No occupational therapy, physiotherapy, Orthotics nothing
I've had to do everything myself,beg for help and I feel guilty like I wasn't bad enough for them to take action or even notice
I feel like a fraud,that I'm not worthy of anything and that I'm just lazy or dramatic
How do you even begin to feel okay about this?
Do you know if there is such a person as a health journey detective? Someone who is able to help a chronically ill person with their complex history and translate that into data, graphics, etc that can be taken to a doctor more easily than a pile of records? Would someone in a role like this need to be in the medical field if they’re just presenting data?
I’m just curious if this community has come across any websites, people, ore resources who do this?
I am having what I am my therapist thinks is chronic illness and medication burnout. I can’t take my pills a lot of the time- my throat makes me vomit instead of swallow. I can usually manage to get a few down- the most important like psych meds etc. but not always. I have done a scope down my throat and I have no physical issues that would be causing this. How do I get over burnout of something I have to do twice a day? I am supposed to take a handful of pills every morning and night. Night is harder for some reason, idk. What to do here. Dealing with chronic illness stress every single day and having to take hand fulls of pills on top of it is too much. And my body won’t let me do it anymore. Everything I have read about it says prioritize sleep- I do- I sleep like 12 hours plus a night and am still exhausted all day. Any help or insight would be great. My therapist has been no help on this either, she seems as lost as I am on it.
Hello lovely people. I was wondering if anyone participates or knows of an active subreddit for exercising with chronic disabilities/illnesses. Thanks!
Howdy y’all, I’m looking for any advice on what I should be careful about as I am about to be going on immune system suppressants indefinitely due to issues with my immune system attacking my nervous system.
I know some basic stuff like “wear a mask in public” and “make sure to wash your hands,” but is there anything else I should be aware of? I want to give myself my best foot forward, especially since I’ve just started fall semester and will be spending a lot of time in public.
Thanks for any advice you have!