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Spoonies and work?
I'm stuck searching for work at the same time I am trying to get a diagnosis sorted out. This is super frustrating! As I am not yet diagnosed fully I'm not currently elligable for any assistance, or income supplementation programs.
I was wondering how many of you are able to work with your chronic conditions? And perhaps an idea of the kind of work you do, or any modifications to the role your employers have been able to make to assist you?
I hope everyone is having a better than usual Sunday! 💜




Some spoons for my spoonies. 💜
I had to quit my last job before I was even done the training for it. Before that I'd only worked part-time or volunteered. Currently, I put my job search on hold because I won't be able to do any 90 day no absence probation until sometime in the new year.
I'd be able to work if employers were willing to give me reduced hours of 15-20 per week and never an 8 hour day. It hard because the second I mention I require adaptions I'm suddenly no longer qualified. I hate being 28 and having practically no work experience and living on disabilty pension of slightly over 1000 a month.
Yeah I'm admittedly terrified to ask for a specific schedule and it's already hard to find work here. I hope the new year brings you the changes you need. 💜
I think you're aware of me going to a sleep study....I'm hoping as a result I can talk to my employers about working from home. This would be ideal for me. Currently I work as an office administrator, and work on a lot of side projects for my bosses, which keeps me busy.
My understanding is bookkeepers and programmers typically work from home a lot - not sure if you have any field experience in either one of those.
I hope you find some answers and relief (both physically and professionally). ❤
I don't yet, but if I get a diagnosis I may qualify for a retraining grant or something so programming or design stuff could be possible.
I wish you the best with whatever comes next. I know you were super frustrated and worried about even doing that sleep study so I'm really proud of you for going. We have to be advocates for our own health and needs... It probably doesn't help that we keep telling people "I'm fine". 💜
Thank you, that really means a lot to me to hear that and be acknowledged.
It can be super hard to take those steps. I ignored my own stuff for years (half the time I figured it was a symptom of a mental health issue or that it was 'normal'). So mad props for being bold and going for it.
I'm a programmer and can confirm that it's not uncommon for a work from home arrangement to work out there. I have one with my employer for days when leaving the house is too difficult.
Fingers crossed on your situation, I hope they let you work from home. <3
I did a lot of super long-term destructive of my mental health stuff to get through school and college, and sort of collapsed for a while afterward. I was already struggling to try and find a job between anxiety and depression, and then a lot of the physical components of my current health puzzle started manifesting. I haven't been able to find any kind of work situation that feels remotely do-able with everything I have going on, but I also don't know if I would qualify for any aid bc the disability system in the US is confusing and crappy (and since I have basically no employment history/lots of symptoms that idk what caused them and if they will continue or worsen).
Long term, I'm hoping to either qualify for some kind of assistance (especially wrt paying for doctors/insurance) or find a job that I can actually do. I have no idea what that would look like. I know what you mean about the diagnosis thing for sure, though. I am not sure if all my symptoms/clusters of symptoms are connected or if there is anything tying them together, and I'm so overwhelmed just making my life vaguely livable that I don't even know where to start.
Anyway, sorry, I feel like this sounds pessimistic. I'm very lucky that I have a reasonably supportive family and can mostly afford medical care for at least my most severe symptoms. I wish I had more help/advice :/
It doesn't sound pessimistic @crescent it sounds like an honest person speaking to their experience. I wish you all the luck in your own struggles. 💜 thanks for sharing with me.
Haha in case anyone saw my phantom edit I forgot this post was in /spoonies already LOL. Brain Fog Fail.
I cashed in my retirement to try to recover and get a diagnosis. My money is being to run out and I'm still in no shape to work like I used to. I have a background in IT support and administration but that work requires long hours, on-call, and you are almost required to be available 24x7. I am working on building skills I can use for possible remote work that would be less physically impacting but I haven't gotten to a point where I can focus or stick to a schedule.
My next step is reviewing my tests from the RA with my Primary. My sleep test only found mild sleep apnea so it's not a big factor. I can't bring myself to do that yet. This whole process triggers my anxiety.
Because I quit my job, I don't know if I'll be able to get any disability while I recover once my retirement runs out. Unfortunately, I ran out of juice before I could go on disability from work. I pushed myself too hard, too long.
I'm not sure what's next so the best I can do is try to salvage what I can for my mental health in the mean time :smiles:
I wish you all the luck in finding a solution!
You too
Merci Beaucoup!
It took me a long time to get a diagnosis, and during that time I lost all of my income as well as my health insurance. It was a nightmare. Which is to say, I fully understand that this is an extremely stressful, scary experience!
I really don't have any advice with regard to the job search except to be really mindful of what you need to feel well, and look for jobs that can allow you to do that. Easier said than done, I know, but from experience I can say that trying to "push through" and do more than your body can handle, even for a little while, can have consequences that will impede your ability to work even further. The reason I had to leave my job completely, instead of taking a leave of absence or another accommodation, was that I pushed myself for so long that I had a complete physical breakdown and needed more than 6 months to recover.
I have been very lucky in that I happen to have a skill set that eventually allowed me to go into business for myself. I can command a high enough hourly rate to keep my hours manageable, and still make ends meet (although, they just barely meet). I can strictly limit my projects, plan hours that allow for lots of sleep, and build in flexibility for when I have a complete no-go day and have to cancel everything. If there is something you can do, even very slowly to start off, which you can build into a steady source of income, that can be quite freeing. Trade offs are that you don't get perks like paid time off, supplemented health insurance, or medical leave.
On an entirely different note, I'm curious as to why anon commenting is disallowed here? I would feel much more comfortable sharing personal details if I could do so anon - I would have set up a completely different username for the comm if I'd noticed from the start, but I didn't. 😔
Totally agree with the "pushing through" thing. I've done that too many times.
@pillbobaggins and I can discuss the anon commenting thing I understand why you might want it.
Thanks! I'm aware that there are reasons comms might not want anon comments - chronic illness is a sensitive subject and I know the last thing we need is an avenue for trolls to come in and cause havoc. But I've also been burned by sharing too much personal info on a site that shall remain unnamed, so I'm trying to limit discussing specifics unless I'm fully anon. It's a balance, I guess, like so many things. I appreciate your willingness to consider it!
Gotcha. ❤
I have two very part-time jobs, and at the moment I'm hanging onto both of them by a thread, but I have pretty much the best set-up I could imagine in terms of working while chronically ill.
They're both desk jobs at very, very small companies; one job I have a physical office but most of the time I'm the only one there, and it's not a butts-in-seats kind of job--meaning, I can do my job from just about anywhere and while I'm expected to keep certain hours, it's not the end of the world if I have to work from home in the morning and then come in later because my body just isn't cooperating. My productivity is what's measured, not so much my attendance. The other job is 100% work from home and I'm able to set my own hours. The first job knows about my health problems; the second job does not.
Well I'm glad you found something that is working for you in some ways. Good luck with your stuffs!!