Holding Down A Job And While Having Pots

[Green48]

The doctor just put me on extended sick leave from my part-time job (not able to work full-time due to condition). He has me off a minimun of 4 months. Being a part-time employee, I am not covered under the Family Medical Leave Act, and I will not have a job when my leave is over (will be terminated by the company I work for prior to my leave expiring). I'm curious, are other POTS patients working? Are there any POTS patients out there who have secured SSI (disability)?

[Jacquie802]

I have been out of work for 7 years. I cannot work full time or part time due to the symptoms I suffer from. Even if I tried to get employment I most likely would not be able to work long. I have more "bad" days than "good" days.

[k&ajsmom]

Hi green,

Excellent question. Im sorry i dont have the answer but im hoping some more experienced potsy can give us both some advice here. I have been self employed for 4 yrs. And my doc put me out in october till january. However i will not be going back then as i have not improved at all. So i am considering ssi but i have no clue if this is a viable option. Sorry to hear ur struggling with this as well...good luck and take care

[hholmes13]

This varies greatly from person to person. I've been on STD twice since my POTS came on in April of 2011. This summer, I was off for almost 14 weeks. We were worried I wouldn't be able to return at all. Luckily, I think between a mix of med changes, physical therapy, and rest I started to improve. I had to take it really slowly going back, but I've been back to work full-time since the end of September. I'm not feeling as good as I did...having to go like crazy 40 hrs a week, take care of things at home, and take care of my daughter takes its toll. I've just had to learn to take it easy when I need to. I've really had to lower my standards for what I accomplish in a day, especially when I'm feeling POTsy.

[cmreber]

Fortunately, I am self employed (my husband and I have our own business) and I have worked from a home office situation for the past three years. (I got sick about 2 years ago.) I can take it easy when I need to and can even nap during work hours if it's a slow day as long as I have the phone where I can answer it. (I also write novels in my spare time, but that, too, is pretty low key and not physical, yay!) Before this I was a phlebotomist at our local hospital and I know, at least for the first year of being sick, that I could not have possibly worked at my old job. Now, with the right meds, diet and exercise, I think that if I wasn't working from home I could have at least a part time job...but I certainly couldn't do my old 5am shift! LOL

[Chaos]

My doc put me on an 8 week medical leave in January 2012 and still hasn't released me to go back. I had a physical job though where I'm on my feet nearly all day. I was working part time, but long days when I worked. I was in the same situation that you have of not qualifying for FMLA and lost my job. I did get long term disability thru work. My understanding is that you have to be out of work for a year before you can apply for social security but maybe that's just what I have to do with my LTD benefits.

Even being part time, you might qualify for short term disability benefits and then long term disability benefits thru your employer. Have you checked into that?

[imre]

I work part time, 3-4 days a week. I could probably work full time if I had that job opportunity. I am also planning on returning to school next summer. It is definitely hard sometimes, but I always seem to get through it. Being responsible about drinking enough and getting enough sleep is crucial. Also, exercise if you can, pretty much live as healthy a life as possible.

Side note; someone on this board posted they are going to medical school. A lot of healthy people cannot handle that type of workload. So, anything is possible! Even with pots:)

[E Soskis]

I don't have POTS but, I do have autoimmune dysautonomia - I work full-time - don't have a choice - no work = no healthcare - I have intermittent FMLA and use it regularly since I receive plasma exchanges every other week and must take the next day off - I used to hang my own IV's in the office but, have not had to do so in a long time - I am blessed to have a job that has very flexible hours - basically, as long as I get the work done, I can come and go anytime of the day or night and work any day or combination of days of the week that I choose. This is particularly helpful when I am flaring and having difficulty sitting up for long periods of time.

I have worked since I was 14 years old - (38 years) and I don't see any hope of retirement. With the economy and healthcare rapidly changing (not for the best), I don't think anyone will be able to stay unemployed for very long - unless you have a great support system and family willing to assist. What a blessing that would be! Just this morning, my family told me they were sick and tired of me being sick and tired.....and yet, I continue to work - me, myself and I!

[Angela]

i work 40 hrs. a week which requires mental intuity and communication but it's a desk job. I wouldn't qualify for disability/SSI

If you search SSI posted by Dani on dinet forum I have posted the disability grid they go by....it's incredibly hard to qualify, depending on age/current job etc.

[TheHuntere]

Do you remember who it was that had POTS and was in medical school? It has always been a dream of mine to be a doctor but when I came down with POTS wasn't sure if it would work out anymore. It would be great to talk to them.

[ramakentesh]

Work is certainly a challenge at times! Was it Jangle in med school?

[Guest wishing&hoping]

I just got on disabiliy in March. The challenge is figuring out how to have a life and interests besides staying home and being sick.

[jknh9]

I'm self-employed and work from home. I was forced to quit a PhD program and turned down a university teaching position because of my health. There's no way I would be able to work full time, especially not at a job as taxing as teaching. I still want to earn a doctorate, but I have to be a full time student to qualify for financial aid, which means teaching 2-3 classes per semester on top of taking classes and doing research-- just not gonna happen for me.

[peregrine]

PhD student here - POTS began in my third year of grad school. I'm fortunate to still be in my program - I have two advisors who are fairly understanding (and I worked with them pre-POTS for 3 years, so we already had a good relationship) and the type and year of the PhD program I'm in means no classes, just research, which is a very flexible thing much (but not all!) of the time, plus my fellowship pays for health insurance. I have a technician I pay off of a small grant I have who does things that need to be done early in the morning, etc. I think in the future I will probably be able to do teaching and research, as long as they're both flexible hours; my problem is mostly needing extreme flexibility in terms of timing/schedules/progress deadlines, since I can work reasonably well most of the time with those accommodations.

Folks in the US who are working (and those looking to return to work) might keep the ADA in mind - if there are accommodations that can help with work or school (having a stool at one's register, flexible hours if you're in a job that could have those, more frequent shorter breaks, etc), you shouldn't hesitate to ask for them with a note from your doctor. (obviously this won't fix anyone's issues entirely - it only enables me to keep my job, not make me a superstar - but worth thinking about)

[adigitalashley57]

With the biggest Irony of them all I am a Hairstylist.

That of course requires me to stand from 11am-8pm 4 to 5 days a week. i only took off 4 weeks when I was first diagnosed and was very very ill. I have some how worked through all of the awful parts of my sickness and sometimes i look back and have know idea how I did it.

But I think ultimately standing all day has given me greater lower leg strength that has in turn given me not such a hard time with pooling and blood flow, so I think it was a blessing in disguise actually.

So I would say with out a doubt absolutely anything is possible given my situation because I was sick sick sick.

Hope this is some positive reinforcement to be stubborn and try and stay out and about because I think working and being out is important for all of us for eventual recovery. Remember this illness is about breaking the cycle of the bad feedback loop not succumbing to it.

take care