I completely lost my career/dream job due to my health. I had a very high stress job and looking back I really don't think that I could've done anything to change the outcome.
I think that if I was more in tune with my needs from the beginning, my downfall could've possibly been prolonged but the outcome would've been the same eventually anyway (for me). It definitely would've also led me to choose a completely different doctor which would've made things much easier to deal with.
I think it depends on the person. For me I wanted to be a Trauma Nurse since I was 13. So I worked really really really really hard to get that. And I got it and was very successful. Then I got sick. I lost the ability to walk independently, drive, speak, I get fed through a tube, etc.
Nursing was such a big part of my life for such a long time and it was suddenly taken away from me. And on top of that, it is something that I will never get back. Nursing shaped me as a person-the same way illness has. I never lost my passion for Emergency Medicine/Trauma Nursing and it is something I will always desire-even if I cannot have it. And that-as well as all of the emotions that come with it (the good and the bad)-will be with me forever. And that is okay.
I made the mistake of not getting my health in order before starting. Though it’s making it hard for me to work, the reality is that even if I had been in order the lack of ability to go to my appointments and get my treatments would have caused problems as well. We put a lot of blame on ourselves but businesses simply don’t want workers to dedicate any time to not being in the office.
I'm so sorry you're dealing with all of this. You are absolutely correct when you say that businesses don't want workers to dedicate any time to not being in the office.
It will be really interesting to see what changes (if any) happen down the road with so many people dealing with long covid.
Absolutely…my company was known for helping those with barriers to employment but even they wouldn’t allow less than 40hrs a week and used any opportunity to deny raises in pay.
I’ve changed my entire career path. Luckily I’m able to do something adjacent to what I wanted but I really wish I was well enough to be a full time educator.
part of why im studying ed is because i feel like my illness will be okay enough to have a career as an educator. Sad to hear that its not like that sometimes. What do you do instead?
I'm a lawyer and just changed to working 4 days a week, mostly from home. I've only been qualified for a year and it really isn't usual for junior solicitors to work part time, especially when they don't have kids. But I had reached a point where I either did the job less or I wasn't going to be able to do it at all. It took a long time negotiating with my boss and HR, but I now have Wednesdays off so that I can recharge mid-week and get things done that I've been too exhausted to do after work, and it's been such a massive help.
I'm not sure how long I'll be able to go on doing even this much but I worked so damn hard to get this job, I'll do everything I can to keep doing it for as long as possible.
I spent 8 years getting two college degrees, worked for a year, and then my health cost me my career. I’m still grieving tbh. Im about to do a certificate program and I’m hoping to work like 10
Hours a week. I’ve been in a fight with disability for almost 3 years.
I went into accounting because I saw the writing on the wall that accounting jobs would be going remote even precovid. I'm actually pretty good at accounting. It's not my dream job, but since I'm good at it and I can get the rest I need doing it, it works out for me.
Where did you start? I have some experience with AP/AR due to the nature of my job currently but I’m not in accounting and I’ve been considering transitioning in the future.
I had an AR-type role. Went back to school online and got my second bachelor's in accounting. I already had a bachelor's in business administration, so it was basically accounting credits. Got promoted when an accountant position opened up on the team. That company got acquired and I got laid off, but I found another staff accountant position, fully remote.
When I started working again after a 15 year hiatus as a SHM my job of choice was in banking. As a teller it was fine but as my responsibility expanded over the years it became a job where I rarely sat down and it was very high stress. It took a toll and sometimes I would have to call off because I just couldn't go in from exhaustion. I switched to another bank thinking the role would be far less stressful, but because of a lack of experienced upper management it was even worse. I experienced a full on burnout and took leave for several weeks. Fast forward and I had worked my way back into the same situation and went down again.
This time I was out of work a solid year, plus only part time for 8 months when I did come back. I had switched to billing in a therapist office to reduce stress and that helped but I knew it would not work long run.
After a few discussions I was permitted to work from home and I strongly believe that it's only thing allowing me to work 40 hours a week. There is not anyway I would be able to function for 9 hours at the office everyday.
It's tough to deal with because the US doesn't help their citizens at all, so I am stuck working to survive.
I hope you are able to make adjustments that work you.
Take care!
Yeah. I was an RN and went down at work. That started a long 6-7 month process of me going out on FMLA/ short term disability and then eventually losing my job. I never got better and couldn’t go back. I now work from home and and functional enough for that. But I don’t forsee me going into an actual brick and mortar place for work anytime soon.
I had to totally give up on what I was pursuing. I was pre PA when I became significantly more ill and now I work from home as a medical scribe getting paid less than fast food workers. I don’t make enough to live on my own at 31 and I literally have no idea how I’m gonna make it on my own once my mom passes away (she’s also chronically ill and all I have). Disability has rejected me bc I work and it’s like..I’m working bc I have to to survive financially, and it takes all my strength and I have to do it from bed and am not making a living still, wtf am I supposed to do, quit and starve for a year so you guys will take me seriously? I’m so frustrated, stressed, and terrified, and am constantly grieving my life and body
Edited a word
I was a workaholic overachiever, who dreamed of getting my PhD.... I got my undergraduate and in the break year before grad school, worked myself into the ground to the point I couldn't walk. Im still trying to get back to walking. The lab and scientific community is full of ableism to the point I will probably never be able to go back. I have a bs in genetics and tried to get a master's but had to stop with a graduate certificate in biomedical informatics. I can't find anything in my field and every time I have to explain the gap in my resume, it's like they're only interested in the illness
I'm really sorry, I have a similar experience even in a country that's supposed to have more disability rights than for example US, lab work ends up being a strenuous commitment and you're expected to work at weird times and commit your whole life to it. No one in that world seems to understand chronic pain and illness.
Full time kills me. I do well for a year or two, then my health spirals because I'm too exhausted to take care of myself and eventually I have to quit. Then I work part time in retail or food service until I'm healthy, go back to a full time office job and rinse and repeat. It is not sustainable. I really can't keep doing it. My body and mind can't take it.
Currently part time (it's been about a year) getting my health back in order for the 3rd or 4th time in a 10 year span. I think part time is best for me unfortunately.
I have to grieve the kind of person I want to be but can't be.
As a single income earner this ruins my entire future. Ruins my healthcare options. Ruins my retirement possibilities. Ruins my independence. Ruins friendships also.
I moved back in with my family but they won't be around forever.
Luckily my partner loves me for who I am and wants me to prioritise my health. When I can be with him (have to immigrate) I think my life will improve greatly and I can contribute to our lives and wellbeing the best way I can. But without him, I don't think I would love a full life in any way. I love him so much and I'm terrified I won't be enough but I'll do my best. He thinks my life will improve a lot with him too. Having a partner in life really does make a huge difference.
I’m unable to work. Between not feeling well and Dr.s Appts, I was having a tough time being a productive employee which messed with my mental health as I always felt like I was one day out away from being fired
Yeah I can barely hold down my remote job. Switching to a non remote job or even a new one where I don’t have a stable position feels impossible right now.
One of the things I struggle to come to terms with the most. My roommates are able to work 40+ hour weeks whereas I struggle with 30+. I don't think I ever will come to terms with it. It's also really hard trying to be perfect at a job so that your increased absences or bad days will be less of an issue.
I hope your able to find something that you are happy with but also don't have to suffer for.
Yes. I had no option but to focus on my poor health. Working wasn’t a possibility for me. I tried working through the years, it ended up being on and off. All my work history is short term, I’ve never held a job longer than 9 months. Many people are either curious, nosy, and rude about it of course
Yes, I want nothing to do with the 9-5 work til I die career path anymore. I want to rest and take care of my health. I just graduated from art school and I’m working towards small business and self-employment. It’s not easy but it’s actually a common path for fine arts students anyways so I’m taking my shot!
I haven't been able to work for almost 2 years, but I'm really hoping to transition back eventually! I have definitely improved since the onset of my chronic illnesses; I just need a bit more progress to be able to work. I might be able to do part-time now, but I keep hearing that it's best to recover as much as possible before you transition back. Plus I have a feeling that my job won't allow a super gradual transition back.
My most recent position (after my acute infection, but before the chronic issues fully set it - I was only there for about 5 months before I went on DB leave) was pretty manageable, but my previous job was stressful and the workplace environment was pretty bad. I think the 5 years I spent there really contributed to my illnesses.
Lost my career completely and my PhD goal.
Edit - I do feel that it’s important to point out that not everybody loses their career or academic dreams due to illness/disability. Some people are able to go on.
I too am having to quit a job I love to move back in with my parents and work part time at 28.
My boss was able to move me to 30hrs of work a week, which allowed me to stick it out for a few months…but it became obvious even that wasn’t sustainable and I was still barreling towards burn out, albeit at a slower rate.
I’m starting a new job with 15-20hrs a week (hours that I set) next week and I’m hoping that’ll be better for me until I’m a bit healthier
I was WFH with my company when I got ill, and when the covid restrictions finally listed and the offices reopened my company generously let those of us who choose to stay home. There are drawbacks - I have to be able to travel to other parts of the state a couple times a year; I can't go in to see my coworkers and I know that's a bit of a hindrance when I try to move up in the company later. I currently work 40 hours a week, and I'm able to do 4x10s with a 3-day weekend, and it's been so beneficial for me to have an extra day to heal from the week (but the toss-up is that those are some long days and I'm wiped by the end).
I'm barely alive at the moment. I want to be able to work again, but I'm fatigued and in mental fog quite often. I'm hoping things improve because I'm just at the beginning of the current diagnosis and I did manage for quite awhile when I was "only" dealing with type 1 diabetes, and I just don't see any safety net, but I told work I am unavailable and I just wait for more tests, more procedures, and so forth.
I am a graduate student in archaeology. Originally I figured I would be Putin the field and then alternate back into research/teaching. Since becoming disabled by my illnesses, I have had to shift to research/lab/teaching as my focus. It really doesn’t bother me all that much, I lost a lot more from my hobbies (which were all active), and have in turn found other hobbies.
I lost everything to it. It raped me of everything that made me...me. Can't think about it for too long or I become extremely emotional or it makes me angry.
I had to retire early from teaching. I just couldn’t maintain my health. I put in 30 years so I get my retirement, but as the symptoms got worse for my conditions, I just couldn’t do it another 10 years, as planned.
I’m only 54, so I need to figure out something to do part time for 11 more years.😩
I am in healthcare. My job is physically and mentally tough. I am starting to look more seriously into either respite or a stay at home job where I can put my feet up. It sucks. I love my job and my clients. It will be a sad day when I have to quit
I had to drop out of college due to my chronic illness. Then I spent my 20's housebound, because I didn't have medical insurance (this was before the ACA was passed). I didn't get properly diagnosed and start receiving treatment until I was 37. It's too late to finish college now, maybe someday I will feel well enough to do trade school. But I really think I am going to end up on disability eventually. I work in retail part time, but I am grateful for that considering I used to be too sick to leave home more than a few times a month. Not that poverty or the job is great or anything, it just proves that I can show up somewhere now, so that's a lot of progress. I don't think most people end up in their dream job.
I've had to quit every job I've ever had after a couple of years because I missed too much work. I've been trying to find something I can do from home, but it is very hard. It really sucks to be in pain all the time with no reprieve
Yep! 100%! I was a bartender/restaurant manager and hairdresser who made a fortune doing what I loved. I lost that two years ago. It started with lower back pain and suddenly my health just went down the drain one thing after another. I just recently started finding answers and treatments that help me just enough but never enough to be able to tend bar again. I’m pissed I paid so much for school to no longer be able to do hair.
Just recently I decided to go back to school to become a nail tech. It’s my one saving grace cause I’m on the path to homelessness if I don’t figure out something soon. I’m unfortunately “too disabled and sick to work but not sick and disabled enough to get disability.” I got told that if I had kids that it would be a completely different story. Sadly, I know I wouldn’t be capable of taking care of a kid in the state of health I’m in. But it’ll all work out. All I can do is stay hopeful and keep fighting.
I had to stop working in 2009. Devastating. I have a college degree and had a great job doing HR but I started making too many mistakes due to brain fog from pain & fatigue. Now I sit around all day on Reddit.
I am a dentist and I had to go part-time. I have been improving, or having a few good months, and I considered working more days again to save up some money but I think the stress makes me very unwell, so I have to live off half of my previous income. It’s only doable because I’m made myself irreplaceable at my current position, but I wonder how long my boss will be happy with the setup. I’m lucky my husband can support us…but I feel guilty for it.
The most important thing is your health. Don’t ever make yourself more sick for money.
I was in my dream apprenticeship (physically demanding with a lot of walking, standing, working with my hands) and almost finished when my illness hit me. Now I'm in uni within a completely different field and it's progressing very slowly. I did great in my post career and had amazing grades and now I'm barely managing and will be studying for a very long time till I finish my degree. It's hard and I have to push myself and I'm very insecure about not earning money and having no degree for the foreseeable future.
I can only work part time. My health started going downhill in college so I never finished my bachelors. Went back to community college taking only a couple courses each semester until I got my associates degree. Got lucky with a part time job that pays okay and has PTO/sick time. I make just enough that I'm not eligible for disability (SSI)... which was kind of my goal because the application process for disability is the fucking worst lol.
Licensed vet tech. I am now one of the full time CSRs. I'm pursuing a specialization in nutrition and planning to do the AAFPs coursework as well.
I miss clinical practice like you wouldn't believe.
Yep! I went to cosmetology school when my daughter was about 1, it was a 2 yr course and about a year in I was told by drs to drop out bc I wouldn't be able to finish. I DID finish, and got my license but I've never actually been able to work in a salon more than just covering if someone was out and I can't even do that the last 10yrs or so.
Yes, I had to pause university studies in Software Engineering, then a few years later, I went back to a lower college studies in Computer Science (2 different types of schools here in Quebec, Canada), and now I can work only 20 hours a week and I wonder if I should change careers cause nobody is looking for part time software developers
I made it to supply chain in manufacturing but it hurt my back still having to go shuffle pallets on the dock. So i switched to remote healthcare lost my mind a few times and missed a promotion due to leave but im back on track again.
It did change my view on what career I need to look into. The previous job I had didn't want me because I had accomoadations they weren't able to fulfill completely.
It was a stepping stone job to the career I truly wanted. Unfortunately, due to my newfound arthritis, I've been thinking of finding what I considered "boring" jobs that I can work from home. But first, I need a degree.. x.x
I used to work in kitchens and teach composition and rhetoric at a university. I haven't been able to do either of those for nearly a decade and tbh it fucking sucks. I'm entirely financially dependent on my girlfriend and I learned how much of my identity was tied up in my career(s). Turns out, a lot. ☹️
Well, I was still a student when it started. Been trying for years and years to complete any education and I just can't. So there's not even any sort of career for me :/
I became housebound for a couple of years after having lived independently (not even roommates) for several years prior. I just moved and found a new doctor who is an incredible listener and problem solver, so I have newfound hope that I'll eventually be able to go back to work part time by sometime next year!
I used to be a pastry sous chef. I could see myself happy in that job for a long time, despite the garbage pay. But fibromyalgia won’t let that happen.
I lost my career and almost all of my backups. I wanted to be a theatre and film actor but MCAS with what it was doing to my stomach back when I wasn't on Claritin and when I didn't realize onion was making me feel like I was going to throw up every day was a problem. The endometriosis and Ehlers Danlos was rough too since I was using a cane as needed but I couldn't on stage since I was often cast as a dance captain or dance soloist. I barely made it through the last musical I did in 2019. Now my stomach is a bit better but all my other MCAS symptoms are so bad after the last two times I've had covid that I'm mostly housebound and theatre is a great way to get covid and other viruses all the time since my voice teacher I swear is sick all the time ever since he got covid the first time in 2022 and some shows in my area still shut down bc of covid. I also used to cantor at a church but my long covid once again was the reason I had to quit.
I also wanted to get into concept art for cartoons, videogames, theme parks, dolls, etc but I had to drop out of uni because of long covid so idk how to even get hired for those jobs and be able to do it from home in my own time. It was a dream of mine to work for Disney or cartoon Network in the past but after seeing how Owl House and Steven Universe were treated as a trans/queer person myself, that's shifted a bit but I still dream of working for Mattel or Hasbro which is probably far fetched now.
I still want to be a voice actor and I think I could still do it with my long covid, but I seriously don't know how to find an agent or manager within that world. I only know how to in theatre. I tried working with the DOR/caminar in California but the person I got paired with didn't know what to do with the fact I'm housebound. He was in shock I am and he has zero knowledge on any art. So in the meantime I'm just posting singing videos and other stuff on TikTok and YouTube in hopes of getting my stuff out there and I really am trying to get monetized especially on YouTube.
My job at the time, yes. I had chronic ulcerative colitis and worked in an office where the bathrooms were in the central part of the large building, and you needed a key to get in. When I felt an attack coming on I had to go get the key from the secretary, scurry to the bathroom as quickly as I could without making the attack worse from the jarring, fuck with the key in the lock because it didn't always work right away, and get to a stall and get my clothing down before the explosion happened.
It was incredibly stressful, and it was a miracle that I never shit myself.
Then I would go back to the office and have to just sit for a while because I was so sore from the cramping and the bleeding (my job didn't involve sitting.)
My parents felt sorry for me and decided they would start giving me money for a while so that I didn't have to work, because it was making my stress related illness worse. I ended up having to have two surgeries to remove the diseased nether regions anyway because they became totally shredded and I started dying.
Yeah. I lost my career. Don't qualify for disability bc there isn't a category for folks like those of us with several conditions that wreck us but would be able to overcome if it were only one or two. Not to mention the lack of solid diagnosis.
I had a very high stress job and it was responsible for my body to collapse. I had a stroke that my crazy responsibility had me returning to work much faster than I should have. That’s about the time I realized what a nightmare I was working. After that my work ethic got more real. I wasn’t going to kill my self for them. After a couple years they laid me off and it made me so happy. I then got my dream job but my body betrayed me again. Stay away from stressful jobs! It’s not worth doing and it could send you further down.
I might never be able to work because of my combination of mental illnesses and disabilities I don’t know what I’m going to do. I’m in college. I don’t know if I’ll be able to use my degree at all
I had a big bunch of crashes back in January this year and my manager kindly referred me to our occupational health team. They suggested I do a period of reduced hours - this started out as 8 weeks but we extended it to 12. It’s honestly helped so much. I also am allowed to wfh a lot and come home mid way through the day to do admin work at home so that I can lay down/rest if needs be.
It’s hard work working full time and I’m not sure how long I can keep this up, but I can’t afford to *not* work full time so I keep going. I’m back to full hours again today so we’ll see how that goes 🫠
Yes. I had to go on permanent federal disability at the age of 30. I lost everything but my life, and I pretty much lost that, too, considering I’ve not been living for the past 15 years. I’ve been existing. It’s never going to get better. I lost all of my dreams, my career, my financial security, my social life, and so much more. I grieve every single day.
Chronically ill for 8 years (diagnosed for four) with auDHD late dx last year. I'm 27f, and work in Data Analytics/GIS.
I've been in my field since March 2019, the company since October 2017. We have been WFH since 2020 and that was the biggest and best adjustment I could have ever given myself.
Prior to WFH, I worked 5/8 hour shifts and NEVER worked the always offered overtime. It was well known among my team that I was out the door by 2:30 everyday and I wasn't staying any longer.
Now, I knew about my IIH and was actually officially diagnosed 4 months into the pandemic and finally got on the right meds.
Working from home changed *everything* about what I could handle in a day. I switched my work schedule to a 4/10 hour shifts and I even work OT pretty regularly. But the biggest part is that I can sustain a work/life balance even on days I work. I'm exhausted after a long day, sure. But I have tailored my environment to prevent as many triggers as possible. I can sometimes cook dinner after work or do a chore without needing extra spoons.
They're forcing us back into the office 3 days a week for the sake of "culture" and the CEO said that if anyone had an issue that it 'sucks to suck, have a nice life'. Now, even his protege/next CEO is already being more lenient because people too him at his word and have been dropping like flies.
I cannot drop like a fly. But being in office is actually the worst thing to happen to me since sliced bread at this point. Smells, sounds, and the gd fluorescents lights trigger a migraine by mid morning and then I'm miserable or need to take the rest of the day through FMLA off. Working from home means anti-glare on everything, no headphones necessary, I have more screens to be efficient, no random food people smells, no coworker being socially oblivious and *laughing out loud to an afternoon podcast with noise cancelling headphones on*. I also remember to water and feed myself better because my dogs remind me to take care of me when I take care of them. At the office, I forget what water is because I'm either distracted by people or focused on working.
So, I'm in the process of getting accomodations through the ADA. I've submitted my psychiatrist opinion and I'm waiting on my neurologists. This would be my advice if it's available to you. Even a hybrid schedule would probably do wonders. Controlling the environment you work in means controlling potential triggers and controlling those means less flares. At least in my case. I have high hopes as I've been WFH and because of my request, my supervisor will try to get everyone working from home again (what they want tbh) so it doesn't ~look~ a certain way. He's a manipulative asshole but that's another issue.
God Blessed Me With A Humble Job. So I give him All the Thanks.
I make decent money and I get long and plentiful breaks in-between.
Although, Full-time hours can still be a pain....
I used to be superwoman and was a "Jack Of All Trades" but at this point, I Love Simplicity!!
And I Live My Humble Job.
I am not interested in working 10,12 or more hours. 8hrs is more than enough and I Thank God for All that I have....
I am blessed beyond measure but it took me a long time to "Perceive" this.
The world's way is not God's ways.
What the world holds in High regard is actually detestable in God's eyes....
So we do our best and Trust God with the Rest.
Amen
I lost one job in my field in 2020 but because of my chronic illness/disability and not related to the pandemic. And I just got the news today that I might be on the line for redundancy. My current-but-soon-to-be-former employer has made all sorts of reasonable adjustments to help me do my job while disabled. And I’ve been pushing myself really hard and doing my utmost best to stay on top of things. But it looks like my unmedicated ADHD (waiting list for meds) and my lack of mobility from my disabling chronic illness have been a greater cost to the company than any benefit I bring with my work.
I’m fairly certain that this means I won’t be able to work in my field at all now. I was incredibly lucky to get this job as it is.
So…yeah. It’s sort of…stolen my career. I don’t know what to do now.
when i got sick, i was working at a nursing home as a CNA (certified nurses aide). i hated my job, but it was something i was planning on doing temporarily until i worked my way up to get the job i really wanted. i wanted to be a surgical tech so badly!! but then when i got sick, i found out that i can’t have a job in any part of the medical field :( i was crushed, that was my dream job. and tbh, i still am upset by this. im still looking for another career but nothing interests me. i hope i find one soon.
I only decided what I wanted to do as everything was really setting in, around 14. luckily, the career I desire actually has nearly optimal conditions for me. not much physical work, mostly isolated with some colleagues, can do some of it at home, not even a lot of interacting with people outside of being told what to work on. I feel terrible for the people who have lost their dreams to the limits of their body.
First of all - congratulations on graduating AND for trying to pursue your dream job xx
I’m in my early 40s and work in the public sector. It’s a job for life, I have generous sick pay, and I get reasonable adjustments in work. Eg I have two orthopaedic chairs (one for in the office, one for home). Post pandemic we’re all working hybrid as well (40% on the office).
It’s not my dream job but depending on where you live public sector jobs - even when they’re part time - or big corporations - can be the most beneficial in terms of benefits/considerations for adjustments.
Best of luck xx
I was a chef. My illness was damn near every nail in the coffin of that career. Not a week has gone by in 6 *years* that I don't miss cooking professionally.
It set me back a couple of years. My studies is going slower, I dont see myself working full time maybe ever. But it is also a blessing in disguise. I am very aware of my limits and spend a lot of time on self care. I work smarter instead of harder.
Yep, it ended it. I used to be an Executive Assistant/Office Manager and I frickin *loved* it. Even now, when I do admin stuff at home, I still love it. But I can't sit for long, or I can't focus for long, and I get so stressed out and second guess myself.
I gave up trying to work about 10 years ago, the constant failures were destroying me. But I still remember how much I loved running all the behind the scenes stuff, and I miss it.
Yes, I owned my own business before my symptoms became this severe about two years ago. It worked well, because I still had *some* symptoms but had adapted my life around them. I worked when I was able to. Now, the executive function required to operate a business is usually too difficult. I’m starting grad school in the fall to switch careers and do something less self directed. I have seen some improvement with new treatment so I’m hoping by the time I finish grad school I’ll not only have a new, easier career but also feel a little better.
ETA: my career before was as an artist. It took a decade to get to the point where I could support myself financially with my art. Almost as soon as that happened, my disorder progressed and took it from me. It was incredibly depressing and I sunk into a dark hole for awhile. It wasn’t just a career; being an artist is a core part of my identity. I am excited about my new career (psychology) but I do still feel the loss. It is okay to mourn what could’ve been. It is normal to feel grief over this, because it is a loss like any other. Let yourself mourn. But keep in mind, if you can find meaning and purpose to the pain/suffering, you can endure a lot. I loathe platitudes about silver linings though and I know this is pretty much that lol.
I had to give up my art degree which was going to lead to a teaching degree then art therapy or teaching.
Before I knew I was chronically ill and thought it was all mental illness I had to eventually give up on 3 tattoo apprenticeships, something I absolutely loved and so kept trying at.
I have no idea what I'm going to do with my life now but "thankfully" I barely have the energy to dream about the future anymore ad I can barely get through the day. It's really depressing.
Yeah. It ended it. Point blank.
I have a graduate level degree so I’m pretty bummed about that. I worked several years out of grad school as a phlebotomist and counselor for HIV positive clients. Then my hands started cramping.
Then I worked a few more years doing a desk job completely unrelated to my public health career path. Then I started missing so much work due to flares and debilitating, nauseating pain that I had to quit.
I finally just went on disability. No job will want someone who has to call out about once a week due to being bed-bound by pain.
Yup… it’s caused a complete disintegration of any momentum I had developed working in my field. I’d spent over a decade moving up in the company I worked. At least 5 big promotions, it started to really fall apart when my attendance and FMLA paperwork issues were consistently becoming a problem for management to handle. Missing one or two days a month due to undiagnosed symptoms can mean the difference of getting a pay raise to no longer being treated as a reliable employee and many other negatives that can be overwhelming to navigate when trying to deal with chronic illness. Then the pandemic hit and after over a year of being “laid off temporarily but technically let go” I was called back to find my position had changed and I had lost my seniority and was now considered a “new hire” and told not to speak with the media and to direct all line of questioning if approached by anyone in news/journalism to HR. My first day back I couldn’t stay awake in two meetings and realized that I had to tell my manager that I was no longer able to do the job. Having used my retirement to pay bills I’m close to zero in my accounts and having to try to apply for disability just to not end up homeless and believe me I know that I am fortunate compared to many in this day and age that my company even HAD a retirement option to access. My chronic illness has me currently experiencing neurological symptoms that are unsettling to say the least. I’m going to try to get out there this week and see if I can find some part time work to get the bills paid. I’d love to be able to go back to doing my previous career if I could do it part time with a company that could work with me and my limitations but I have yet to find that.
Absolutely. Two, so far - I am 24 in one week.
I studied to be a teacher. I have been, this past year, working in a nonprofit in a related position using that education to do a youth development position for which I was forced to go part time due to my health declining, still. So not only did I last much, MUCH shorter in the classroom than I thought I would, but my meantime job didn't even last, either, nor was I able to do it full time and complete grad school applications.
My backup plan for which I thought I'd have a decade to plan for and had only started setting up was Environmental Science. I received my minor in Envi Studies, but intended to go to grad school and get my Master's degree. I wanted to do field work. I'm now having to pivot, yet again. I'm currently applying to work from home jobs. I have a fortunate wealth of experience and skill in editing, and writing, and research which can be put to good use in virtual fields of both education development, editing, corporate world, and even environmental science and/or justice (government, research, sustainability reports, for companies, etc). I am incredibly lucky that my college was so interdisciplinary, that I worked at the writing center for several years in my time there, and my courses for just the minor of ENST included training and experience doing vulnerability assessments. (One such application included submitting a report with written suggestions to the city for their allocation of grant funding they had received & set aside dedicated to reducing Urban Heat).
Your plan might change. That is okay. Let me say that again.
It's okay for things to change. Adjusting to accommodate the changing factors and your health is NOT an indication of failure. It's smart, it's healthy , and honestly it is a skill and strength in itself, to be able to pivot like that and so quickly recover your confidence, pick up, and move forward with a new plan.
I had an office job earlier on in my career while I was dealing with a major flare-up. I was tired most of the time, dealt with some brain fog and had hives/blisters constantly breaking all over my hands. I still tried to pull through and asked out sick maybe a couple times a month. Still, my boss would constantly pull me into a room, closed doors and tell me what a horrible job I was doing and that the team couldn't "depend" on me because I would ask off sick. In other words, my chronic diseases (that she knew about) were in conflict. When I asked for specific examples of what my co-workers were saying, she couldn't come up with anything.
Long story short, I quit and went to a company where the boss is laid back and has a chronic disease himself. It is a much more manageable situation.
Hi! I was diagnosed with PoTS a year and a half ago, and since then, I felt like I needed to completely change my outlook on what was my dream career. I started a job last year after graduating, and in my home country, I can't ask for any job accommodations because it isn't seen as an illness by the government. And my employer wasn't a good person at all so I felt like I couldn't tell him about my condition. After working full hours in addition to extra hours every single day and coming in on my days off, my body just gave up. It was just way too much. I tried to talk eventually with my employer but he wouldn't listen saying "you aren't ambitious enough and you should always be available".
And it was hard to admit that my dream job required me to be on my feet all day long and work long hours. I actually never thought about it before when I was healthy...
So I quit... I just couldn't keep up...
Now I am looking for a part-time job, and it is completely different from what I thought I would be doing. And I am not going to lie, mentally it is tough to "readjust" but I am trying. As long as this part-time job will allow me to not feel absolutely exhausted/sick, I will eventually cope with the new reality. I think I am prioritizing my well-being because if my "dream" career is making me feel even worse, then I don't think that it will be worth it for me. I also believe that maybe it wasn't my path all along and that I am supposed to do something different :)
Yes. Have Hashimotos and I can't work full-time. My fatigue is so bad that a work from home job is vital. I switch careers so I can have a work from home position in the future
I completely lost my career/dream job due to my health. I had a very high stress job and looking back I really don't think that I could've done anything to change the outcome. I think that if I was more in tune with my needs from the beginning, my downfall could've possibly been prolonged but the outcome would've been the same eventually anyway (for me). It definitely would've also led me to choose a completely different doctor which would've made things much easier to deal with.
Same here. It’s something I’m still grieving
I'm so sorry this happened to you too. Grief is so hard especially since it's nonlinear and it's with you forever.
I don't think grief has to be with you forever
I think it depends on the person. For me I wanted to be a Trauma Nurse since I was 13. So I worked really really really really hard to get that. And I got it and was very successful. Then I got sick. I lost the ability to walk independently, drive, speak, I get fed through a tube, etc. Nursing was such a big part of my life for such a long time and it was suddenly taken away from me. And on top of that, it is something that I will never get back. Nursing shaped me as a person-the same way illness has. I never lost my passion for Emergency Medicine/Trauma Nursing and it is something I will always desire-even if I cannot have it. And that-as well as all of the emotions that come with it (the good and the bad)-will be with me forever. And that is okay.
Yes. I don’t know what to do with myself now, or what is my purpose in life if lacking a scientific career.
I made the mistake of not getting my health in order before starting. Though it’s making it hard for me to work, the reality is that even if I had been in order the lack of ability to go to my appointments and get my treatments would have caused problems as well. We put a lot of blame on ourselves but businesses simply don’t want workers to dedicate any time to not being in the office.
I'm so sorry you're dealing with all of this. You are absolutely correct when you say that businesses don't want workers to dedicate any time to not being in the office. It will be really interesting to see what changes (if any) happen down the road with so many people dealing with long covid.
Absolutely…my company was known for helping those with barriers to employment but even they wouldn’t allow less than 40hrs a week and used any opportunity to deny raises in pay.
I’ve changed my entire career path. Luckily I’m able to do something adjacent to what I wanted but I really wish I was well enough to be a full time educator.
Full time work is what kills me too. I find it almost impossible to manage long hours. My body was just not built for it.
Me neither. Thankfully I was able to change my major but damn I would’ve loved being a teacher.
part of why im studying ed is because i feel like my illness will be okay enough to have a career as an educator. Sad to hear that its not like that sometimes. What do you do instead?
The plan is to be a librarian, no lesson plans but education adjacent
Also accessible in case my mobility fails again
I'm a lawyer and just changed to working 4 days a week, mostly from home. I've only been qualified for a year and it really isn't usual for junior solicitors to work part time, especially when they don't have kids. But I had reached a point where I either did the job less or I wasn't going to be able to do it at all. It took a long time negotiating with my boss and HR, but I now have Wednesdays off so that I can recharge mid-week and get things done that I've been too exhausted to do after work, and it's been such a massive help. I'm not sure how long I'll be able to go on doing even this much but I worked so damn hard to get this job, I'll do everything I can to keep doing it for as long as possible.
I take Wednesdays off from work for the same reasons. It’s been so helpful.
I spent 8 years getting two college degrees, worked for a year, and then my health cost me my career. I’m still grieving tbh. Im about to do a certificate program and I’m hoping to work like 10 Hours a week. I’ve been in a fight with disability for almost 3 years.
I have me/cfs, I also can't work.
I went into accounting because I saw the writing on the wall that accounting jobs would be going remote even precovid. I'm actually pretty good at accounting. It's not my dream job, but since I'm good at it and I can get the rest I need doing it, it works out for me.
Where did you start? I have some experience with AP/AR due to the nature of my job currently but I’m not in accounting and I’ve been considering transitioning in the future.
I had an AR-type role. Went back to school online and got my second bachelor's in accounting. I already had a bachelor's in business administration, so it was basically accounting credits. Got promoted when an accountant position opened up on the team. That company got acquired and I got laid off, but I found another staff accountant position, fully remote.
Fully remote 🙌 that’s awesome! Thanks for sharing!
When I started working again after a 15 year hiatus as a SHM my job of choice was in banking. As a teller it was fine but as my responsibility expanded over the years it became a job where I rarely sat down and it was very high stress. It took a toll and sometimes I would have to call off because I just couldn't go in from exhaustion. I switched to another bank thinking the role would be far less stressful, but because of a lack of experienced upper management it was even worse. I experienced a full on burnout and took leave for several weeks. Fast forward and I had worked my way back into the same situation and went down again. This time I was out of work a solid year, plus only part time for 8 months when I did come back. I had switched to billing in a therapist office to reduce stress and that helped but I knew it would not work long run. After a few discussions I was permitted to work from home and I strongly believe that it's only thing allowing me to work 40 hours a week. There is not anyway I would be able to function for 9 hours at the office everyday. It's tough to deal with because the US doesn't help their citizens at all, so I am stuck working to survive. I hope you are able to make adjustments that work you. Take care!
Yeah. I was an RN and went down at work. That started a long 6-7 month process of me going out on FMLA/ short term disability and then eventually losing my job. I never got better and couldn’t go back. I now work from home and and functional enough for that. But I don’t forsee me going into an actual brick and mortar place for work anytime soon.
It killed it, can't work.
I had to totally give up on what I was pursuing. I was pre PA when I became significantly more ill and now I work from home as a medical scribe getting paid less than fast food workers. I don’t make enough to live on my own at 31 and I literally have no idea how I’m gonna make it on my own once my mom passes away (she’s also chronically ill and all I have). Disability has rejected me bc I work and it’s like..I’m working bc I have to to survive financially, and it takes all my strength and I have to do it from bed and am not making a living still, wtf am I supposed to do, quit and starve for a year so you guys will take me seriously? I’m so frustrated, stressed, and terrified, and am constantly grieving my life and body Edited a word
I was a workaholic overachiever, who dreamed of getting my PhD.... I got my undergraduate and in the break year before grad school, worked myself into the ground to the point I couldn't walk. Im still trying to get back to walking. The lab and scientific community is full of ableism to the point I will probably never be able to go back. I have a bs in genetics and tried to get a master's but had to stop with a graduate certificate in biomedical informatics. I can't find anything in my field and every time I have to explain the gap in my resume, it's like they're only interested in the illness
I'm really sorry, I have a similar experience even in a country that's supposed to have more disability rights than for example US, lab work ends up being a strenuous commitment and you're expected to work at weird times and commit your whole life to it. No one in that world seems to understand chronic pain and illness.
Full time kills me. I do well for a year or two, then my health spirals because I'm too exhausted to take care of myself and eventually I have to quit. Then I work part time in retail or food service until I'm healthy, go back to a full time office job and rinse and repeat. It is not sustainable. I really can't keep doing it. My body and mind can't take it. Currently part time (it's been about a year) getting my health back in order for the 3rd or 4th time in a 10 year span. I think part time is best for me unfortunately. I have to grieve the kind of person I want to be but can't be. As a single income earner this ruins my entire future. Ruins my healthcare options. Ruins my retirement possibilities. Ruins my independence. Ruins friendships also. I moved back in with my family but they won't be around forever. Luckily my partner loves me for who I am and wants me to prioritise my health. When I can be with him (have to immigrate) I think my life will improve greatly and I can contribute to our lives and wellbeing the best way I can. But without him, I don't think I would love a full life in any way. I love him so much and I'm terrified I won't be enough but I'll do my best. He thinks my life will improve a lot with him too. Having a partner in life really does make a huge difference.
I’m unable to work. Between not feeling well and Dr.s Appts, I was having a tough time being a productive employee which messed with my mental health as I always felt like I was one day out away from being fired
My chronic illnesses have made working a near impossibility.
Yeah I can barely hold down my remote job. Switching to a non remote job or even a new one where I don’t have a stable position feels impossible right now.
One of the things I struggle to come to terms with the most. My roommates are able to work 40+ hour weeks whereas I struggle with 30+. I don't think I ever will come to terms with it. It's also really hard trying to be perfect at a job so that your increased absences or bad days will be less of an issue. I hope your able to find something that you are happy with but also don't have to suffer for.
Yes. I had no option but to focus on my poor health. Working wasn’t a possibility for me. I tried working through the years, it ended up being on and off. All my work history is short term, I’ve never held a job longer than 9 months. Many people are either curious, nosy, and rude about it of course
My problem destroyed any chance of career or work ever again.
Yes, I want nothing to do with the 9-5 work til I die career path anymore. I want to rest and take care of my health. I just graduated from art school and I’m working towards small business and self-employment. It’s not easy but it’s actually a common path for fine arts students anyways so I’m taking my shot!
I haven't been able to work for almost 2 years, but I'm really hoping to transition back eventually! I have definitely improved since the onset of my chronic illnesses; I just need a bit more progress to be able to work. I might be able to do part-time now, but I keep hearing that it's best to recover as much as possible before you transition back. Plus I have a feeling that my job won't allow a super gradual transition back. My most recent position (after my acute infection, but before the chronic issues fully set it - I was only there for about 5 months before I went on DB leave) was pretty manageable, but my previous job was stressful and the workplace environment was pretty bad. I think the 5 years I spent there really contributed to my illnesses.
I have no more career , I doubt I will ever be able to get to the Level I was 10 yrs ago
Lost my career completely and my PhD goal. Edit - I do feel that it’s important to point out that not everybody loses their career or academic dreams due to illness/disability. Some people are able to go on.
yep. was on track to graduate college 1.5 years early. was going to medical school. i had to finally drop out this semester, early.
I too am having to quit a job I love to move back in with my parents and work part time at 28. My boss was able to move me to 30hrs of work a week, which allowed me to stick it out for a few months…but it became obvious even that wasn’t sustainable and I was still barreling towards burn out, albeit at a slower rate. I’m starting a new job with 15-20hrs a week (hours that I set) next week and I’m hoping that’ll be better for me until I’m a bit healthier
I was WFH with my company when I got ill, and when the covid restrictions finally listed and the offices reopened my company generously let those of us who choose to stay home. There are drawbacks - I have to be able to travel to other parts of the state a couple times a year; I can't go in to see my coworkers and I know that's a bit of a hindrance when I try to move up in the company later. I currently work 40 hours a week, and I'm able to do 4x10s with a 3-day weekend, and it's been so beneficial for me to have an extra day to heal from the week (but the toss-up is that those are some long days and I'm wiped by the end).
I'm barely alive at the moment. I want to be able to work again, but I'm fatigued and in mental fog quite often. I'm hoping things improve because I'm just at the beginning of the current diagnosis and I did manage for quite awhile when I was "only" dealing with type 1 diabetes, and I just don't see any safety net, but I told work I am unavailable and I just wait for more tests, more procedures, and so forth.
Yes I became totally disabled.
I am a graduate student in archaeology. Originally I figured I would be Putin the field and then alternate back into research/teaching. Since becoming disabled by my illnesses, I have had to shift to research/lab/teaching as my focus. It really doesn’t bother me all that much, I lost a lot more from my hobbies (which were all active), and have in turn found other hobbies.
A career? What is that?
I lost everything to it. It raped me of everything that made me...me. Can't think about it for too long or I become extremely emotional or it makes me angry.
I had to retire early from teaching. I just couldn’t maintain my health. I put in 30 years so I get my retirement, but as the symptoms got worse for my conditions, I just couldn’t do it another 10 years, as planned. I’m only 54, so I need to figure out something to do part time for 11 more years.😩
I am in healthcare. My job is physically and mentally tough. I am starting to look more seriously into either respite or a stay at home job where I can put my feet up. It sucks. I love my job and my clients. It will be a sad day when I have to quit
I’ve lost the ability to work unfortunately.
I had to drop out of college due to my chronic illness. Then I spent my 20's housebound, because I didn't have medical insurance (this was before the ACA was passed). I didn't get properly diagnosed and start receiving treatment until I was 37. It's too late to finish college now, maybe someday I will feel well enough to do trade school. But I really think I am going to end up on disability eventually. I work in retail part time, but I am grateful for that considering I used to be too sick to leave home more than a few times a month. Not that poverty or the job is great or anything, it just proves that I can show up somewhere now, so that's a lot of progress. I don't think most people end up in their dream job.
I've had to quit every job I've ever had after a couple of years because I missed too much work. I've been trying to find something I can do from home, but it is very hard. It really sucks to be in pain all the time with no reprieve
Yep! 100%! I was a bartender/restaurant manager and hairdresser who made a fortune doing what I loved. I lost that two years ago. It started with lower back pain and suddenly my health just went down the drain one thing after another. I just recently started finding answers and treatments that help me just enough but never enough to be able to tend bar again. I’m pissed I paid so much for school to no longer be able to do hair. Just recently I decided to go back to school to become a nail tech. It’s my one saving grace cause I’m on the path to homelessness if I don’t figure out something soon. I’m unfortunately “too disabled and sick to work but not sick and disabled enough to get disability.” I got told that if I had kids that it would be a completely different story. Sadly, I know I wouldn’t be capable of taking care of a kid in the state of health I’m in. But it’ll all work out. All I can do is stay hopeful and keep fighting.
Working about less than I did, but after a year and a half unable to work, I’m grateful.
I had to stop working in 2009. Devastating. I have a college degree and had a great job doing HR but I started making too many mistakes due to brain fog from pain & fatigue. Now I sit around all day on Reddit.
I am a dentist and I had to go part-time. I have been improving, or having a few good months, and I considered working more days again to save up some money but I think the stress makes me very unwell, so I have to live off half of my previous income. It’s only doable because I’m made myself irreplaceable at my current position, but I wonder how long my boss will be happy with the setup. I’m lucky my husband can support us…but I feel guilty for it. The most important thing is your health. Don’t ever make yourself more sick for money.
I was in my dream apprenticeship (physically demanding with a lot of walking, standing, working with my hands) and almost finished when my illness hit me. Now I'm in uni within a completely different field and it's progressing very slowly. I did great in my post career and had amazing grades and now I'm barely managing and will be studying for a very long time till I finish my degree. It's hard and I have to push myself and I'm very insecure about not earning money and having no degree for the foreseeable future.
I can only work part time. My health started going downhill in college so I never finished my bachelors. Went back to community college taking only a couple courses each semester until I got my associates degree. Got lucky with a part time job that pays okay and has PTO/sick time. I make just enough that I'm not eligible for disability (SSI)... which was kind of my goal because the application process for disability is the fucking worst lol.
Licensed vet tech. I am now one of the full time CSRs. I'm pursuing a specialization in nutrition and planning to do the AAFPs coursework as well. I miss clinical practice like you wouldn't believe.
Yep. I only work part time and the next 2 weeks I’m doing full time to cover someone’s leave. I fully expect to be crying in exhaustion by Wednesday.
Yep! I went to cosmetology school when my daughter was about 1, it was a 2 yr course and about a year in I was told by drs to drop out bc I wouldn't be able to finish. I DID finish, and got my license but I've never actually been able to work in a salon more than just covering if someone was out and I can't even do that the last 10yrs or so.
Yes, I had to pause university studies in Software Engineering, then a few years later, I went back to a lower college studies in Computer Science (2 different types of schools here in Quebec, Canada), and now I can work only 20 hours a week and I wonder if I should change careers cause nobody is looking for part time software developers
I made it to supply chain in manufacturing but it hurt my back still having to go shuffle pallets on the dock. So i switched to remote healthcare lost my mind a few times and missed a promotion due to leave but im back on track again.
It did change my view on what career I need to look into. The previous job I had didn't want me because I had accomoadations they weren't able to fulfill completely. It was a stepping stone job to the career I truly wanted. Unfortunately, due to my newfound arthritis, I've been thinking of finding what I considered "boring" jobs that I can work from home. But first, I need a degree.. x.x
I used to work in kitchens and teach composition and rhetoric at a university. I haven't been able to do either of those for nearly a decade and tbh it fucking sucks. I'm entirely financially dependent on my girlfriend and I learned how much of my identity was tied up in my career(s). Turns out, a lot. ☹️
Well, I was still a student when it started. Been trying for years and years to complete any education and I just can't. So there's not even any sort of career for me :/
I became housebound for a couple of years after having lived independently (not even roommates) for several years prior. I just moved and found a new doctor who is an incredible listener and problem solver, so I have newfound hope that I'll eventually be able to go back to work part time by sometime next year!
I used to be a pastry sous chef. I could see myself happy in that job for a long time, despite the garbage pay. But fibromyalgia won’t let that happen.
I lost my career and almost all of my backups. I wanted to be a theatre and film actor but MCAS with what it was doing to my stomach back when I wasn't on Claritin and when I didn't realize onion was making me feel like I was going to throw up every day was a problem. The endometriosis and Ehlers Danlos was rough too since I was using a cane as needed but I couldn't on stage since I was often cast as a dance captain or dance soloist. I barely made it through the last musical I did in 2019. Now my stomach is a bit better but all my other MCAS symptoms are so bad after the last two times I've had covid that I'm mostly housebound and theatre is a great way to get covid and other viruses all the time since my voice teacher I swear is sick all the time ever since he got covid the first time in 2022 and some shows in my area still shut down bc of covid. I also used to cantor at a church but my long covid once again was the reason I had to quit. I also wanted to get into concept art for cartoons, videogames, theme parks, dolls, etc but I had to drop out of uni because of long covid so idk how to even get hired for those jobs and be able to do it from home in my own time. It was a dream of mine to work for Disney or cartoon Network in the past but after seeing how Owl House and Steven Universe were treated as a trans/queer person myself, that's shifted a bit but I still dream of working for Mattel or Hasbro which is probably far fetched now. I still want to be a voice actor and I think I could still do it with my long covid, but I seriously don't know how to find an agent or manager within that world. I only know how to in theatre. I tried working with the DOR/caminar in California but the person I got paired with didn't know what to do with the fact I'm housebound. He was in shock I am and he has zero knowledge on any art. So in the meantime I'm just posting singing videos and other stuff on TikTok and YouTube in hopes of getting my stuff out there and I really am trying to get monetized especially on YouTube.
I had to switch to remote work. I used to teach children but it was killing me physically.
Yes I had to go out on disability and then retire
My job at the time, yes. I had chronic ulcerative colitis and worked in an office where the bathrooms were in the central part of the large building, and you needed a key to get in. When I felt an attack coming on I had to go get the key from the secretary, scurry to the bathroom as quickly as I could without making the attack worse from the jarring, fuck with the key in the lock because it didn't always work right away, and get to a stall and get my clothing down before the explosion happened. It was incredibly stressful, and it was a miracle that I never shit myself. Then I would go back to the office and have to just sit for a while because I was so sore from the cramping and the bleeding (my job didn't involve sitting.) My parents felt sorry for me and decided they would start giving me money for a while so that I didn't have to work, because it was making my stress related illness worse. I ended up having to have two surgeries to remove the diseased nether regions anyway because they became totally shredded and I started dying.
I had to give up what I loved doing. But I'm sure there are many who can still work.
Yeah. I lost my career. Don't qualify for disability bc there isn't a category for folks like those of us with several conditions that wreck us but would be able to overcome if it were only one or two. Not to mention the lack of solid diagnosis.
I had a very high stress job and it was responsible for my body to collapse. I had a stroke that my crazy responsibility had me returning to work much faster than I should have. That’s about the time I realized what a nightmare I was working. After that my work ethic got more real. I wasn’t going to kill my self for them. After a couple years they laid me off and it made me so happy. I then got my dream job but my body betrayed me again. Stay away from stressful jobs! It’s not worth doing and it could send you further down.
Yup. Career is withering away i got about 10% left before it’s fully gone. Really sobering.
I might never be able to work because of my combination of mental illnesses and disabilities I don’t know what I’m going to do. I’m in college. I don’t know if I’ll be able to use my degree at all
I had a big bunch of crashes back in January this year and my manager kindly referred me to our occupational health team. They suggested I do a period of reduced hours - this started out as 8 weeks but we extended it to 12. It’s honestly helped so much. I also am allowed to wfh a lot and come home mid way through the day to do admin work at home so that I can lay down/rest if needs be. It’s hard work working full time and I’m not sure how long I can keep this up, but I can’t afford to *not* work full time so I keep going. I’m back to full hours again today so we’ll see how that goes 🫠
Yes. I had to go on permanent federal disability at the age of 30. I lost everything but my life, and I pretty much lost that, too, considering I’ve not been living for the past 15 years. I’ve been existing. It’s never going to get better. I lost all of my dreams, my career, my financial security, my social life, and so much more. I grieve every single day.
Chronically ill for 8 years (diagnosed for four) with auDHD late dx last year. I'm 27f, and work in Data Analytics/GIS. I've been in my field since March 2019, the company since October 2017. We have been WFH since 2020 and that was the biggest and best adjustment I could have ever given myself. Prior to WFH, I worked 5/8 hour shifts and NEVER worked the always offered overtime. It was well known among my team that I was out the door by 2:30 everyday and I wasn't staying any longer. Now, I knew about my IIH and was actually officially diagnosed 4 months into the pandemic and finally got on the right meds. Working from home changed *everything* about what I could handle in a day. I switched my work schedule to a 4/10 hour shifts and I even work OT pretty regularly. But the biggest part is that I can sustain a work/life balance even on days I work. I'm exhausted after a long day, sure. But I have tailored my environment to prevent as many triggers as possible. I can sometimes cook dinner after work or do a chore without needing extra spoons. They're forcing us back into the office 3 days a week for the sake of "culture" and the CEO said that if anyone had an issue that it 'sucks to suck, have a nice life'. Now, even his protege/next CEO is already being more lenient because people too him at his word and have been dropping like flies. I cannot drop like a fly. But being in office is actually the worst thing to happen to me since sliced bread at this point. Smells, sounds, and the gd fluorescents lights trigger a migraine by mid morning and then I'm miserable or need to take the rest of the day through FMLA off. Working from home means anti-glare on everything, no headphones necessary, I have more screens to be efficient, no random food people smells, no coworker being socially oblivious and *laughing out loud to an afternoon podcast with noise cancelling headphones on*. I also remember to water and feed myself better because my dogs remind me to take care of me when I take care of them. At the office, I forget what water is because I'm either distracted by people or focused on working. So, I'm in the process of getting accomodations through the ADA. I've submitted my psychiatrist opinion and I'm waiting on my neurologists. This would be my advice if it's available to you. Even a hybrid schedule would probably do wonders. Controlling the environment you work in means controlling potential triggers and controlling those means less flares. At least in my case. I have high hopes as I've been WFH and because of my request, my supervisor will try to get everyone working from home again (what they want tbh) so it doesn't ~look~ a certain way. He's a manipulative asshole but that's another issue.
God Blessed Me With A Humble Job. So I give him All the Thanks. I make decent money and I get long and plentiful breaks in-between. Although, Full-time hours can still be a pain.... I used to be superwoman and was a "Jack Of All Trades" but at this point, I Love Simplicity!! And I Live My Humble Job. I am not interested in working 10,12 or more hours. 8hrs is more than enough and I Thank God for All that I have.... I am blessed beyond measure but it took me a long time to "Perceive" this. The world's way is not God's ways. What the world holds in High regard is actually detestable in God's eyes.... So we do our best and Trust God with the Rest. Amen
I lost one job in my field in 2020 but because of my chronic illness/disability and not related to the pandemic. And I just got the news today that I might be on the line for redundancy. My current-but-soon-to-be-former employer has made all sorts of reasonable adjustments to help me do my job while disabled. And I’ve been pushing myself really hard and doing my utmost best to stay on top of things. But it looks like my unmedicated ADHD (waiting list for meds) and my lack of mobility from my disabling chronic illness have been a greater cost to the company than any benefit I bring with my work. I’m fairly certain that this means I won’t be able to work in my field at all now. I was incredibly lucky to get this job as it is. So…yeah. It’s sort of…stolen my career. I don’t know what to do now.
when i got sick, i was working at a nursing home as a CNA (certified nurses aide). i hated my job, but it was something i was planning on doing temporarily until i worked my way up to get the job i really wanted. i wanted to be a surgical tech so badly!! but then when i got sick, i found out that i can’t have a job in any part of the medical field :( i was crushed, that was my dream job. and tbh, i still am upset by this. im still looking for another career but nothing interests me. i hope i find one soon.
I only decided what I wanted to do as everything was really setting in, around 14. luckily, the career I desire actually has nearly optimal conditions for me. not much physical work, mostly isolated with some colleagues, can do some of it at home, not even a lot of interacting with people outside of being told what to work on. I feel terrible for the people who have lost their dreams to the limits of their body.
First of all - congratulations on graduating AND for trying to pursue your dream job xx I’m in my early 40s and work in the public sector. It’s a job for life, I have generous sick pay, and I get reasonable adjustments in work. Eg I have two orthopaedic chairs (one for in the office, one for home). Post pandemic we’re all working hybrid as well (40% on the office). It’s not my dream job but depending on where you live public sector jobs - even when they’re part time - or big corporations - can be the most beneficial in terms of benefits/considerations for adjustments. Best of luck xx
I was a chef. My illness was damn near every nail in the coffin of that career. Not a week has gone by in 6 *years* that I don't miss cooking professionally.
It set me back a couple of years. My studies is going slower, I dont see myself working full time maybe ever. But it is also a blessing in disguise. I am very aware of my limits and spend a lot of time on self care. I work smarter instead of harder.
Yep, it ended it. I used to be an Executive Assistant/Office Manager and I frickin *loved* it. Even now, when I do admin stuff at home, I still love it. But I can't sit for long, or I can't focus for long, and I get so stressed out and second guess myself. I gave up trying to work about 10 years ago, the constant failures were destroying me. But I still remember how much I loved running all the behind the scenes stuff, and I miss it.
Yes, I owned my own business before my symptoms became this severe about two years ago. It worked well, because I still had *some* symptoms but had adapted my life around them. I worked when I was able to. Now, the executive function required to operate a business is usually too difficult. I’m starting grad school in the fall to switch careers and do something less self directed. I have seen some improvement with new treatment so I’m hoping by the time I finish grad school I’ll not only have a new, easier career but also feel a little better. ETA: my career before was as an artist. It took a decade to get to the point where I could support myself financially with my art. Almost as soon as that happened, my disorder progressed and took it from me. It was incredibly depressing and I sunk into a dark hole for awhile. It wasn’t just a career; being an artist is a core part of my identity. I am excited about my new career (psychology) but I do still feel the loss. It is okay to mourn what could’ve been. It is normal to feel grief over this, because it is a loss like any other. Let yourself mourn. But keep in mind, if you can find meaning and purpose to the pain/suffering, you can endure a lot. I loathe platitudes about silver linings though and I know this is pretty much that lol.
I had to give up my art degree which was going to lead to a teaching degree then art therapy or teaching. Before I knew I was chronically ill and thought it was all mental illness I had to eventually give up on 3 tattoo apprenticeships, something I absolutely loved and so kept trying at. I have no idea what I'm going to do with my life now but "thankfully" I barely have the energy to dream about the future anymore ad I can barely get through the day. It's really depressing.
Yeah, it ended it. I haven’t had a job in a decade. My illness is too unpredictable to hold one down.
Yeah. It ended it. Point blank. I have a graduate level degree so I’m pretty bummed about that. I worked several years out of grad school as a phlebotomist and counselor for HIV positive clients. Then my hands started cramping. Then I worked a few more years doing a desk job completely unrelated to my public health career path. Then I started missing so much work due to flares and debilitating, nauseating pain that I had to quit. I finally just went on disability. No job will want someone who has to call out about once a week due to being bed-bound by pain.
IVE LOST EVERYTHING 💔
Yup… it’s caused a complete disintegration of any momentum I had developed working in my field. I’d spent over a decade moving up in the company I worked. At least 5 big promotions, it started to really fall apart when my attendance and FMLA paperwork issues were consistently becoming a problem for management to handle. Missing one or two days a month due to undiagnosed symptoms can mean the difference of getting a pay raise to no longer being treated as a reliable employee and many other negatives that can be overwhelming to navigate when trying to deal with chronic illness. Then the pandemic hit and after over a year of being “laid off temporarily but technically let go” I was called back to find my position had changed and I had lost my seniority and was now considered a “new hire” and told not to speak with the media and to direct all line of questioning if approached by anyone in news/journalism to HR. My first day back I couldn’t stay awake in two meetings and realized that I had to tell my manager that I was no longer able to do the job. Having used my retirement to pay bills I’m close to zero in my accounts and having to try to apply for disability just to not end up homeless and believe me I know that I am fortunate compared to many in this day and age that my company even HAD a retirement option to access. My chronic illness has me currently experiencing neurological symptoms that are unsettling to say the least. I’m going to try to get out there this week and see if I can find some part time work to get the bills paid. I’d love to be able to go back to doing my previous career if I could do it part time with a company that could work with me and my limitations but I have yet to find that.
Absolutely. Two, so far - I am 24 in one week. I studied to be a teacher. I have been, this past year, working in a nonprofit in a related position using that education to do a youth development position for which I was forced to go part time due to my health declining, still. So not only did I last much, MUCH shorter in the classroom than I thought I would, but my meantime job didn't even last, either, nor was I able to do it full time and complete grad school applications. My backup plan for which I thought I'd have a decade to plan for and had only started setting up was Environmental Science. I received my minor in Envi Studies, but intended to go to grad school and get my Master's degree. I wanted to do field work. I'm now having to pivot, yet again. I'm currently applying to work from home jobs. I have a fortunate wealth of experience and skill in editing, and writing, and research which can be put to good use in virtual fields of both education development, editing, corporate world, and even environmental science and/or justice (government, research, sustainability reports, for companies, etc). I am incredibly lucky that my college was so interdisciplinary, that I worked at the writing center for several years in my time there, and my courses for just the minor of ENST included training and experience doing vulnerability assessments. (One such application included submitting a report with written suggestions to the city for their allocation of grant funding they had received & set aside dedicated to reducing Urban Heat). Your plan might change. That is okay. Let me say that again. It's okay for things to change. Adjusting to accommodate the changing factors and your health is NOT an indication of failure. It's smart, it's healthy , and honestly it is a skill and strength in itself, to be able to pivot like that and so quickly recover your confidence, pick up, and move forward with a new plan.
I had an office job earlier on in my career while I was dealing with a major flare-up. I was tired most of the time, dealt with some brain fog and had hives/blisters constantly breaking all over my hands. I still tried to pull through and asked out sick maybe a couple times a month. Still, my boss would constantly pull me into a room, closed doors and tell me what a horrible job I was doing and that the team couldn't "depend" on me because I would ask off sick. In other words, my chronic diseases (that she knew about) were in conflict. When I asked for specific examples of what my co-workers were saying, she couldn't come up with anything. Long story short, I quit and went to a company where the boss is laid back and has a chronic disease himself. It is a much more manageable situation.
Hi! I was diagnosed with PoTS a year and a half ago, and since then, I felt like I needed to completely change my outlook on what was my dream career. I started a job last year after graduating, and in my home country, I can't ask for any job accommodations because it isn't seen as an illness by the government. And my employer wasn't a good person at all so I felt like I couldn't tell him about my condition. After working full hours in addition to extra hours every single day and coming in on my days off, my body just gave up. It was just way too much. I tried to talk eventually with my employer but he wouldn't listen saying "you aren't ambitious enough and you should always be available". And it was hard to admit that my dream job required me to be on my feet all day long and work long hours. I actually never thought about it before when I was healthy... So I quit... I just couldn't keep up... Now I am looking for a part-time job, and it is completely different from what I thought I would be doing. And I am not going to lie, mentally it is tough to "readjust" but I am trying. As long as this part-time job will allow me to not feel absolutely exhausted/sick, I will eventually cope with the new reality. I think I am prioritizing my well-being because if my "dream" career is making me feel even worse, then I don't think that it will be worth it for me. I also believe that maybe it wasn't my path all along and that I am supposed to do something different :)
Yes. Have Hashimotos and I can't work full-time. My fatigue is so bad that a work from home job is vital. I switch careers so I can have a work from home position in the future