I've noticed many times on the messageboard the unsuccessful claims for disability. I've been down this road so many times.
Here in the UK the laws on disability seem the same although worded differently. In my experience, and I qualify for that title since I've had numerous claims turned down, I concluded that it's not how you represent your claim, more on who actually approves or disproves it. A general practitioner will only have limited knowledge of scleroderma, my own general practitioner is no exception, having admitted that she has never before had contact with anyone with scleroderma, and it's generally recognised that a doctor will consider themselves lucky if they ever come across a patient with the condition throughout their working life such is the rareness of the condition.
So how do you go about claiming! Well of course it depends on how scleroderma affects you, although you will undoubtedly have a degree of disability that qualifies you for the criteria. In my own experience, my general practitioner refused to sign anything and not even return a report to the DSS, which I have to say I find very infuriating and arrogant. Fortunately I am a born fighter and I simply wouldn't lie down on this one and I kept on applying until someone got so tired of reading the forms, they sent an independant doctor out to see me.
The forms are meant to catch you out. I found myself contradicting myself on many occasions throughout the form. I remember messing up pieces of paper, sheets I'd written to base my claim without writing them on the form first. I decided that since they only wanted to know about my worst days, I would base my claim on the winter months only. I began with writing something like I have more bad days with my fingers and toes in the winter and on cold days.
The forms also asked what I could reasonably do, reasonable for me would be able to walk a short distance outdoors without pain, any more than a short distance would affect my circulation and my feet would be numb, painful and uncomfortable. I concluded that I could not reasonably make a meal without discomfort, peeling potatoes with or without an aid could trigger a raynauds attack, not to mention the total dysfunction of my fingers to work properly due to scleroderma. Handling any kind of cold meat, uncooked veg or even opening packaging or tins can cause distress and pain or even a total inability to do the job. I also stated that holding a pan and lifting it from the cooker was very difficult for me to do. I told them about the burns I'd recieved due to numb fingers after putting them into hot water and not feeling the temperature, and how the bathtub had caused burns to my feet becuse of my inability to test the temperature of the water.
I told them I needed help to prepare a meal, help to bathe, dress and wash my hair. I couldn't squeeze the shampoo out of the container or wash my hair poperly in the shower, never using a hand held shower.
I always wear loose clothing, no zips, buttons or fasteners that require any kind of dexterity.
The forms were all based on what you could reasonably do, and without sounding too disabled, I answered all the questions as honestly and as detailed as I could based on my very worst days.
I also continued to explain what my everyday life was like. Shopping, handling cash and loose change and how carrying a bag woud trigger another raynauds attack. Taking a bus or train and fumbling with change, even opening a car door or handling the keys. All these things we take for granted and we don't really take notice of. What we have to ask is, can a normal person of my age do this without the trouble we have!
I got letters from people who knew me best, my nurse, support group and The Raynauds Association to which I belong. My general practitioner could not know all these things about me because she only ever sees me when I have something other than scleroderma to complain about, and let's face it what more can there be to complain about except a sore throat, hay fever or a headache, I'm sure there are other things too. And the very fact that you're at the general practitioner on that day is because you're well enough to go outside and see her, so all she sees is a lady with sclero and a sore throat.
I'd welcome anyone who wants help in filling in the forms. I may not be able to help, but I can give you some encouragement. The most important thing of all is that you never give up, that's what the doctors are hoping you will do.