Pots A Disability?

[san90x0x0]

HI, I've recently visited an autonomic disorder doctor and was officially and finally diagnosed with pots/dysautonomia....however, the things i found to be very shocking is what the doc had to say about it. I was explaining to her how I hoped the meds she gave me will work because I'm frustrated at the fact that i feel sick all the time and how its negatively affecting my school life regarding work, etc. But her reply was you're not even that sick! its not like you have a disability or something like those people who have parkinsons or are limbless! I just sat there like what??? she insist that i do suffer from dysautonomia/pots but her reply seemed like yeah your heart rate is high and everythings messed up but you dont have it that bad enough for it to impact my life. I know there are people in worse conditions than I am out there but I still feel like pots has totally taken over my life, makes me feel like crap, and I do feel like I am disabled!!! Am I wrong to feel that way? I was wondering what others thought about this? What does disability really consists of and do you think what the doctor had to say was true?? Thanks..

[futurehope]

I am disabled. I'm functioning at 20% capacity. I'm unreliable and cannot commit to anything in advance. Who would want to employ that???

The disability is similar to chronic obstructive pulmonary disease or congestive heart failure. I have an article I gave my lawyer to that effect when filing for disability.

Your doctor does not seem too familiar with the effects of living with POTS. My family doctor is like that. She thinks I'm "healthy" because I do not show up with bronchitis, sinusitis or colds like other "unhealthy" people.

[Guest tearose]

From my experience...Some are disabled by POTS and some are not. There are varying degrees. Also there are times of relapse and remitting severity.

Unfortunately, dysautonomias are new to the medical scene and research is still being done. I was very troubled recently when a physician I was trying to educate said "anyone can bring on POTS by allowing themselves to get dehydrated"... as if to say we are just not drinking water!

futurehope...would you please post the link to that information you mentioned.

thanks, tearose

[futurehope]

Tearose,

The link I had to the Mayo article no longer works. The only recourse I have is to find a printed version somewhere.

I would have to look for it in my "disability" notes.

[Sunfish]

i think this is the article..if not it deals with many of the same issues/comparisons...

http://www.mayoclinicproceedings.com/inside.asp?AID=112&UID=

hope this helps,

melissa

[nadine]

Sunfish-

thank you so much for posting that link, helpful information. I had one doctor tell me just treat the symptoms and go on with your life! I wish it was that simple-

[MightyMouse]

POTS isn't officially a disability (at least according to US government agencies that administer disability benefits), but as the article Sunfish posted points out, it can be just as disabling as many better known disorders. The doctor who spoke to you is misinformed about how autonomic dysfunction can cause a person to feel terribly bad.

Nina

[Guest CyberPixie]

I think disability means you are unable to do anything that a *normal* person can. So in my view I'm disabled though I dont tend to think of myself as disabled (or want too). I can't even get myself a drink so according to that I'm very much disabled. However, I think society determines who is disabled, if say there were beds to rest on in shops etc things would be a lot easier, then we wouldn't be disabled! (If you see what I'm saying, too early in the day for me, can't express myself properly).

[futurehope]

Thanks, Sunfish. That looks like the article I had used. Some doctors need to read it, I think.

[san90x0x0]

Thanks everyone for your replies and the very helpful article. I myself do believe that pots indeed can be very disabling and I was just so frustrated and dumbfounded at what my doctor had to say. Your replies were encouraging and I am grateful to realize once again that I am not alone about feeling like many just don't understand what we go through everyday and how hard it can be. Thanks!

[lthomas521]

its not like you have a disability or something like those people who have parkinsons or are limbless!

Before I got my POTS diagnosis, one of my doctors tested me for lupus, and the tests came back negative. A friend of mine who has lupus and lost a leg because of it was disappointed when my tests came back negative. I said, "You want me to have lupus? But you lost a leg to it, and it almost killed you." She said, "Yeah, but lupus is treatable, so I'm much higher functioning than you are now." So there you have it. A person with lupus and a below the knee amputation said that I was far more disabled than she was. And that's before my POTS got really bad.

[Sophia3]

Melissa,

THanks so much for this OUTSTANDING ARTICLE (though I haven't finished reading it all)

For those on disability or applying, it is NOT THE NAME OF THE DISABILITY that gets you Soc Sec or whatever. It's the proof you are VERY LIMITED and not reliable to sit up for long, stand for long, and the severe cognitivie impairment that many of us have SEVERELY. aka Brain Fog.

I got disability my first attempt in 1990 when I didn't know what O.I. was. I first had Chronic adult mono later changed to CFS (Chronic Fatigue Syndrome) I had a cognitive impairment briefing test but a psychiatrist. Between my CFS doc and the shrink, they were able to put my illness under an AFFECTIVE disorder.

When you look up my code (which most of us do not know unless we see the form, it is on the SHORT 4 page disability review form) It can mean BIPOLAR which I am not. It can also mean depression. The bottom liine, they did NOT HAVE a category for CFS so depression is how I got Soc Sec.

We NOW KNOW the reason MY situation is worsening is due to POTS..and in my case, I have gotten worse in 16 years..especially the last 5 or 6.. I told my ex cfs doc, when I stand up I feel horrible but when I lie down, I often get major relief. He didn't know OI and CFIDS Chronicle had only mentioned NMH or fainting and NOT Orthostatic Tachycardia.

No matter what the name, a rose still smells like a rose. It's all about finding a code to fit your limitations and the name is just part of YOUR LIMITATIONS and the diagnosis.

Hope you find a nicer more compassionate doctor. You deserve better.

Sophia

[MNsue]

You really deserve to have a MD that understands your illness, and how disabling it can be. I had a similar situation 5 years ago when I had a flare of undiagnosed POTS. I had a MD yell at me in the office and accuse me of taking my thyroid meds incorrectly (As if I would have any desire to do so). I was so ill, I did not have the strength to find a new MD at the time.

I believe a doctor with that kind of attitude is not looking out for my best interests. I have found a new MD, and she is the reason I was diagnosed with POTS. She was the one that suggested a tilt study after 16 years with this strange disease. A new MD may be the difference in getting some quality of life back.

Hang in there.

Rhonda