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Need Help Describing Pots To Government

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I see the government SSID doctor next week to determine if I am still in need of beneifts of disbility. I have been on SSD for 5-7 yrs. now I am being interegated. What do I say? It is so hard for me to actually discribe pots. I am in a wheelchair and I can not work. I had at nuerlogist but he is arogant and thinks he is God and doesn't see why I can't work other then I will be in pain. HE doesn't like when I call ANY of my symptoms POTS. But back in WI where I am from I had a POTS specialist who understood and agreed with me I have POTS and my symptoms are pots.

Please....I am so afraid...what do I say to this gov physcian? Also they are sending me for a mental evaluation too . does anyone know what that is about?

Any help is appreciacted.

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Hi Heidi,

sorry to hear that this medical review is causing you so much stress. I would have thought that the fact that you need to use a wheelchair would demonstrate how severe your symptoms can be.

Do you black out if you stand up? Although a horrible thing to do, actually having a black out during the physical might convince them of your problems - however don't just let yourself collapse, they will be good a spotting "fake" blackouts.

Have you read through the information sections on the main DINET website? There are lists of symptoms that might help you describe the peculiar wobbly sensations we get. Also I guess that your condition fluctuates, if so explain to them the difference that a bad day can make and how unpredicatable your bad spells are. I can get up and go to work feeling ok but feel dreadful and need to lie down within an hour of starting work.

About the "mental evaluation" they may be trying to see if any of your symptoms are psychological in origin. I don't know about the US but in some countries you still qualify for disability even if your symptoms are psychological as they appear to be real and really stop you from doing things. (No I am not saying that YOUR symptoms are psychlogical). Also being chronically ill often causes a degree of depression so don't be suprised if they think that you are a bit depressed - it is a normal reaction to any chronic illness to become frustrated by your physical limitations.

Good luck, try not to worry - just explain what life is like with POTS.


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One further thought - do you have any letters or medical notes from your old doctor in WI? Either showing them to the doctor or giving them his details as your original physician might allow them to use his opinion of your symptoms. Worth a try.


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Hello Heidi,

I don't think you have to explain POTS in great detail. You can give a brief overview of what POTS is, but the doctor needs to know your symptoms specifically and exactly how they limit you. Even if the doctor does know what POTS is he will still need to know about your case specifically. POTS varies so much from person to person (and from year to year for some). Some people are able to work even with POTS, while others have more severe symptoms and are unable to work.

Bring in every piece of information on you that you have. You can bring in past medical records from WI like flop suggested. If you keep a medical journal that shows what daily life is like for you, bring that in. Also, before the appointment it would probably help to type up all of your symptoms and bring in the list. That way when the doctor asks what your symptoms are you won't forget any.

As you tell your symptoms to the doctor make sure you go into great detail. I don't know what your exact symptoms and limitations are, so I'll just make up an example. Instead of saying "I can't stand up very much" perhaps one could say, "I can't stand up for more than 3 minutes before I get dizzy, lightheaded, hot, sweaty, and nauseated. If I stand up for 30 seconds longer I will faint. This keeps me from being able to do laundry, walk to the mailbox, walk from my car into a building, take a standing shower, and prepare meals."

When someone has POTS, a disability determination is not made on the diagnosis, but rather on the severity of the symptoms. So make sure you're specific about your symptoms and the way they limit you. Try not to worry too much about the doctor maybe not being familiar with POTS. He does work with people who are disabled, so he will at least be familiar with symptoms and limitations they place on people.

The mental evaluation shouldn't be anything to worry about. Some people get disability because of, or partially because of, depression or other mental illnesses that prevent them from working. As flop said, if they determine that you are somewhat depressed, don't worry about it. It shouldn't hurt your case at all.

I hope that things go well for you, Heidi. Let us know!


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there is a lot of information at this site. try to be precise in telling what you can and what you can't do. tell them what your day looks like (in terms of what you can usually do during the day) and be precise in that as well. i mean, i once told that i was able to go to the baker's to buy a bread (using a motorized bike and only when there were just one or two people before me as i wasn't able to wait in line) and they interpreted it as: she's able to do the grocerieshopping.

also i made my medical file including what dysautonomia is and what medication i use, who my doctors are and what i am able to do during the day. a lot of my infornmation comes from this site. one of the reasons that i made this file is that my memory can be very bad and i forget to tell important information!

hope this helps a bit,

good luck,

corina :rolleyes:

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I felt nervous too but I just described in very factual terms what I couldn't do and why I couldn't do it. I also provided some detailed medical explanations. eg I can't life my arms above my head because this posture causes tachycardia and a lowering of bp....

They were meant to be renewing whether I would carry on having it, but now I have been awarded a higher rate and I will be awarded a brand new car of my choice every 3 years, fully taced and insured- all I have to pay is the petrol. Shame I can't drive yet! :) I'm planning on starting lessons real soon tho! :o

I hope you get on ok! :)

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