Working Full Time

[lynnie22]

Many years ago I went on disability for what was then diagnosed as CFS, but who knows....it may have been POTS all along. Anyway, getting disability for CFS was not easy. I had to fight for it twice, but finally got Medicare Disability. I eventually went back to work. I work for myself, seeing clients one after another, and can only say, I really understand how challenging some days are. I'm glad my job is a sitting one, and I'm glad my chair reclines, but some days I cancel clients last minute, and sometimes I'm not sure what's going to happen. I think people have made some really good suggestions, about school, about finding a job that can help you with your needs.

Anoj, your experience sounds horrible....glad you're out of there.

[Anoj]

thank you for your compassion.

i agree with what seattle said earlier about trying to remain employed and that filing for disability is risky. i was able to get it a few times through my employee disability insurance, but i have seen many others struggle with getting SSDI. but that is my personal preference and opinion.

i was too afraid to explain a gap in my work history. sometimes your resume won't even make it past HR. explaining the gap because of a serious medical condition (that isn't gone, by the way!) didn't seem like a good idea. requesting accommodations didn't seem fun, either. after the way i was treated at my job, i was not confident that going to a new place with all sorts of problems would have been well-received. employers don't seem too keen on people working from home, in my experience, even with all of the technology we have today. i might be late for work in the mornings. i might not be able to drive in on some days. every day is different with dysautonomia, and that was the hardest thing for them to understand. they pinned me down to a schedule eventually. i worked from home on tuesdays & thursdays. it was a tremendous help and kept that paycheck rolling in, which was all that mattered. incidentally, i was very good at getting my job done while working from home. in fact, i may have even worked harder. and like rama said earlier, spent less time feeling crappy and trying not to faint. was more productive at home. but nothing i did was right. every little tiny thing i did was scrutinized. they drove me crazy.

i looked for work-from-home jobs, but none of them paid enough. i am in the perfect field for it, but i didn't know how to find those jobs that naomi mentioned earlier. i am working half-time now and thinking about buying a private disability insurance policy through our mortgage insurer. i am not sure if that is what was being discussed earlier in this thread with mortgage disability?

one other excuse for me will always be parenthood, lol. if necessary, i will say i worked part-time to spend more time with my kids. i know there are laws against discrimination, but people don't always follow them.

oh! one more thing ... at one point i did consult an employment lawyer becs of some of the things being done to me, but that experience wasn't the best, either. when he learned of the company i work for, he said, "XX, that is a good company." i worked for a prestigious company in my state that politically was improper to criticize in some circles. another thing was the lawyer rarely returned my calls. i realized that lawyers want to make money, and that helping little clients like me weren't very motivating.

btw, this was a good site that i consulted often: http://www.eeoc.gov/facts/telework.html

[bustersacc11]

I am currently on disability after a year long process. I tried holding on to a mindless task job behind a desk and couldn't do it. The dizziness, brain fog, fatigue was unbearable. Many people on disability we have all tried over and over to hold onto to some sort of work. I know that I have tried over and over again but not for reasons about SSDI is hard to get. Going on disability we are stereotyped sometimes as being lazy, don't want to work, or "you can't do anything." When disabled hits you in the face, I felt like I let everyone down. My wife, my family, and my 3 year old daughter. For me, when I came to terms that I could not hold onto a job I lost a piece of who I was. All my formal education, my work experience, and self confidence...gone. For me personally, I was not thinking SSDI is risky. I didn't want to apply because then I was giving in to the fight. I didn't want to lose and wanted to so badly keeping fighting but I couldn't do it. To this day, I feel humiliated that I am on disability and lost when people ask me what do you do for a leaving. My discussions with people on disability you are banking so much on getting approved but you also feel a sense of this is what is left of my life. Disappointed is an understatment; yet, you are desperately needing some cash flow and insurance. That is the reality whether I like or not.

When it comes to SSDI it is easy for people to say what they would do until it totally hits them and the reality is SSDI is all you have left as an option. It is easy for me to say what I would do in this case or particular situation but unless I can truly empathize I really can't relate. God willing if that day should ever come and I am well enough to work, even though I still have dysautonomia, I will explain my gap in employment with honesty. Probably won't work in today's competitive environment. Everyone is looking for that slight advantage. What would I really have to lose. Bigger point, is if I am well enough to work then I am probably feeling somewhat better. If I have more energy and less symptoms than I would be excited because it would allow me to do more with my family and going back to work would just be a bonus!

Great topic! All those still able to work in some capacity, while managing dysautonomia, I think that is awesome!!! I truly value all different positions from topics on this forum. Just want to share from a different perspective.

[Anoj]

great post, buster. great perspective. i'm glad you were able to get SSDI!

[Racer]

Thanks everyone for the advice and replies, I greatly appreciate it!

[dpeeps]

I am able to work, but my job allows me to work from home. I have been on a conference call with my boss and said "whoops, gotta lay down". (I get pre-sycope even when seated - no clue why). I am lucky that she is so understanding. We continue the call with me laying on the floor - probably not something I could do if I worked in the office. I usually take a two hour break in the late afternoon and then come back online for a couple hours in the evening. This seems to work for me. The days that are hardest are the migraine days.... On top of having to stop working, get into a dark room to shut down, etc. I have really negative thoughts like - "I cannot do this anymore (work)", "I am missing work and going to get fired!". It's like on top of enduring the pain of the migraine, I have this negative tape running through my mind which is not really even based in reality, but it happens every time. For me migraine = a temporary altered mental state. I just tell myself "This will pass" and pray for sleep.... when I wake up, I am generally much better and things are back in perspective.

[NaomiSpellman]

So when I became a adult, I really felt the need to go the extra mile to prove myself and tried my best to hide any weakness. Of course I didnt know I had autonomic dysfunction, and I ignored the symptoms for many years. Even if a doctor did tell me I had this, I would have ignored it.

Yes exactly: I was told at age 27 "You might have POTS". But I would not believe it! I made fun of that doctor for years. And I always played sports and made art when I was still able, because I didn't feel so clumsy then.

Orthohypo and Racer -

Thank you for your thoughts. I appreciate your acknowledgement: that it is OK for us to use a wheel chair at work. And I can see it becomes essential eventually. When I qualify for healthcare, that will be a priority, to get a wheelchair. But for the time being getting in a wheelchair is a step too far for me, because I don’t know how to acclimate to the idea. It will take years mentally for me to accept it.

Anoj - very sad to read about your experience with your employer. I can only imagine how painful this is, on top of the minute by minute struggle we have. But it is encouraging that you did succeed to work at home. I also find that is what I am capable of at this point and am working toward such a solution for myself.