Hey everyone. I was diagnosed with PoTS last week, and am being evaluated for HEDS. I've had symptoms of both of these for as long as I can remember. I currently work full time. I'm almost 23. I've been at my job for 2 years now. I've been struggling for a long time but it has gotten significantly worse in the past year and a half and I was wondering at what point should I bring this up with my employer. I never said anything in the past because I never had a diagnosis until now. In the past I just take more small breaks and push through, but it's getting to the point where I cant stand or walk for very long without almost passing out or hurting in some way shape or form. I'm currently being medicated for Fibromyalgia, drinking more water and electrolytes for the PoTS and just being careful In general with my joints so they don't slip out on me. I love my job and want to stay there as long as I possibly can. But I'm not sure how long I could do that safely without any accommodations. Any advice is welcome and thank you in advance.


Myalgic encephalomyelitis/ Chronic fatigue syndrome (ME/CFS)

Hypermobility Syndromes

Postural Orthostatic Tachycardia Syndrome (POTS)

Fibromyalgia (FM)

View all
  • anemone


    if youre in the usa, it should (?) be a legal requirement that your job provide "reasonable accommodation" including things like assistive equipment (seating is common), changes in job duties, etc. as much as the process can suck, i can't see any reason not to try it, especially if you're active with medical providers and wanting to keep the job... if you live in an at-will state, it's possible they can try and fire you for it by coming up with some other reason, and if they did... a. is that really an employer you would have been able to continue working for? and b. you can take legal action, with compensations up to and including getting your job back, if you can prove it was related to your disability. i don't think any of this should be relevant, especially with a major employer, but if it became relevant you're not just SOL. outside of the usa, i'm not so sure, but i can only imagine that most places would have some sort of system in place (and likely one better than here). at the very least, it should be alright to start the conversation regardless of where you are, and your employer can give more specific advice on what that process may look like. you could even do something like try doing the job with a wheelchair - something that would allow you to sit to help with the dizziness and prevent a lot of potential injury from dislocation. if it comes to the point that you decide to leave your job and seek ssdi disability (usa-specific) rather than employment doing something less physically taxing, i have some words of caution. first of all, find a lawyer BEFORE you start your claim. most ssdi lawyers know that disabled people don't have much money to throw around, so they work on contingency. it will help your claim go faster and easier, and they can help you navigate the jungle that is applying for ssdi. second, make sure you have as much info as you can before applying. what you did to try and make the job work, resume-like info about your past jobs, names, phone numbers, addresses of all the doctors youve seen since the onset of your disability, all your diagnoses, etc. the more you have everything in order, the less of a nightmare it'll be compiling the ridiculous amount of information they ask. getting a copy of your medical records doesn't hurt your chances either. and third... make sure you have a way to provide for your living expenses, without working for income, for the next 2-3 years. help from family, even moving back in with them, is the best option. savings can help but i have a hard time imagining anyone our age would have enough in savings to live for more than a couple months, much less a couple years... i'm at 1 year 9 months since my initial application and don't have a hearing date yet. best of luck to you

  • 55isMe


    I definitely agree on gettingca disability lawyer if you go for disability. 30 years ago, was my first flare (chronic fatigue and then fibro joined in too). Lost. Why. Seriously because i was too young. Answer given was no proof of it being permanent. Even though their own conditions say 》1year, which it was already 18 months. This time around, different symptoms, mostly pots, like 200bpm. Working from home even though that is not allowed at our company. Dr filled out ADA form.

    • 55isMe


      One more, i recommend starting by telling your direct supervisor. If they can make the concessions that you need. Id celebrate and stop there. If not, then proceed to HR. But nowadays hr is seldom there to help the employee. So they are my last resort. In my case, HR tried to make me get short term disability and FMLA, even though i did not even miss a single day of work yet at that point. My doctor approved and did the paperwork, but the 3rd part FMLA company denied it. Thought i was going to lose my job because of stupidity. Turns out that my supervisor and his boss each took on our HR and helped conceal my future absences. I worked all my hours (just when i could) except post-mastectomy recovery. But even then, they let me come back for a couple hours a day at 2 weeks and then stretch it out longer without objection. So i could keep up with what was needed and balance out my return. Good guys.

  • Viewfromthehammock


    I feel your pain. I’m still working but I miss so much h I don’t see how I’m still employed!

  • CorgiDad98


    Hey there. I’m 24 and struggling with my employee over ME-related issues as well. In my experience, transparency (whatever you’re comfortable with) goes a long way. Luckily, every employer I’ve had since my diagnosis has been empathetic and accommodating, including altering my responsibilities where needed. If your employer is unwilling/unable to accommodate you, I’d talk with an attorney about what rights you have. Regardless, an employer who can’t empathize with you is not worth your time or your value !!! Stay strong and know that I’m in your corner.

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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