By C. Bowie
Because I was awarded Social Security Disability Income (SSDI) on my initial try I've been given the unofficial title of "expert authority" on SSDI among some in my community. I happen to have a unique combination of skills acquired while working for a tax accountant and getting a master's degree in government forms (and government thinking) and I know how to write.
I have helped several other PWCs complete their forms and all of them have been awarded SSDI. While I don't claim to have a surefire way to file and receive SSDI, I would like to share a few things I have learned.
* Filing for SSDI can be one of the most difficult things you will ever do. In order to complete the forms and provide adequate information, you will have to confront the full extent of your disability. In other words, you are going to have to put aside any denial you are harboring, even though that denial may be the only thing that gets you out of bed in the morning. Most of us go day-to-day convincing ourselves that "it's not that bad," but in order to get disability you need to chronicle just how bad it is. Confronting the reality of what your life was like before the CFIDS and what it's like now can be quite painful. Be prepared.
* When in doubt, keep explaining. You cannot write too much. One of the first questions is "Describe a typical day." None of us have typical days; sometimes we're up and sometimes we're down. While it would be accurate to answer the question this way, it provides no information. Assume they know nothing about your illness (they may not) and include as many details as possible. Start at the beginning (when you wake up) and describe how you feel (energy level, pain, emotions, etc.). Go through your day step-by-step, hour-by-hour. Explain how some days are "High Energy" ("I showered and did laundry") and how others are "Low Energy" ("I skipped lunch because I was too tired to open the refrigerator door"). Explain how sick and depressed you get when your illness is at its worst ("I would have committed suicide, but I was too tired to go into the bathroom and find the razorblades."). Add as many extra pages of paper as you need. Kill them with information. Don't be afraid to repeat yourself.
* Neatness doesn't count. Don't try to complete the perfect form. If you could still complete a long government form (precisely typed, proper grammar, correct spelling, moving descriptions) in a timely manner (10 days!) you'd still have a job. Get real! You're tired, you're sick, your mind is hazy and your vocabulary has major holes. That's why you need SSDI! Just get down as much information as you can in the time you have and don't worry about how it looks.
* If you've always been afraid of, or had difficulty writing, ask someone to help you. Generally the words you use to answer the questions will be just fine, but it may be easier for if you let someone else put your words on paper. Let them read the question to you, tell them the answer and let them ask you if the answer needs more explanation or is confusing. It doesn't say anything bad about you that someone assisted you. It's ok, nobody can do everything!
* Have a caring friend or relative close by while you complete your forms and accumulate information. I went through the process by myself (not realizing how painful I was going to find it). It helps to have someone there to encourage and support you. It really helps when you've forgotten a word (or two, or 10). Most of all it helps to have someone to lean on when you confront just how bad having CFIDS is and how much you have been forced to give up. Confronting this may be the price you have to pay to get SSDI (along with the guilt of taking money "simply" because you're sick). Cling to those around you, remember those of us who've gone before you (we understand and are rooting for you) and push through. Let people help and support you. That's what we're here for. I always feel great when I can lend support to someone; it's not something I get to do much of anymore.
After you've completed (and mailed) your forms, you can go back to the necessary denial that makes life bearable. You can say to yourself, "It's really not that bad," as you push yourself out of bed.