Like many people with Chronic Fatigue Syndrome, nearly all of my tests and blood work had come back normal, and I could not afford any fancy testing, so I did not know if I could get approved.
My mom thought we could still show that I was sick and she was right! Here is everything we did to show Social Security how sick I was:
- I was consistent. Everything I wrote and everything I said to all of my doctors and to everyone at Social Security was very clear: I was 100% disabled. My condition was severe and I was completely unable to do any work of any kind. All of this was completely true.
- My mom collected every single medical record for me, plus treatment notes, plus laboratory tests from everywhere I had been in the past 1-2 years. Many of the tests did not show much, but there sure was a lot of them!
- By that time, I was too sick and not able to travel to see my doctors, but fortunately I had been to many doctors in the past year. I wrote a note explaining that I was homebound and requesting a letter for my disability application. In the note, I wrote down all my symptoms and limitations. I made sure it was brief, less than one page, so the doctor would read it.
- My mom sent my note to every doctor I had seen in the past year, even doctors I had only seen once or twice. I am not sure if she called to follow up.
- My mom sent the request to five doctors and three returned letters. One letter was really excellent, and the other two were helpful. I discovered that you absolutely never know which doctor is going to be good at writing disability letters. It was not who I expected!
- I was receiving a home aide through my social services agency. We contacted my caseworker and asked for a copy of my assessment files.
- I filled out the Adult Function Form. I had to do it just a little at a time because I was not well. I had a little guidebook, so I did a little reading about good ways to answer questions.
- I also asked my home aide to write a short letter describing the help I needed.
- My mom and I read through all my records and tests. My mom and I went through the records and circled in red the most important things that we did not want them to miss. Out of 200 pages of records, we circled about 15 things. We circled all medical signs, plus a few places that described how severe my condition was and a few places that described my problems with functioning.
- Like many people with Chronic Fatigue Syndrome, nearly all my lab tests came back normal, and I could not spend hundreds of dollars or travel far to get more tests. However, I did have some medical signs and my doctor listed these in his letter. My doctor found these during regular examinations at his office. He wrote “enlarged cervical lymph nodes”, “a positive sign for Rohmberg”, “neurological exam demonstrating 4/5 motor weakness in extremities”, and “presence of 15/18 trigger points.” I also had some minor abnormalities in blood work, such as low cortisol and slightly elevated EBV levels.
- When I went to the Social Security doctor, I brought a copy of the excellent letter mentioned above and handed it directly to the doctor. The letter was short (one page) so he was willing to read it right then. The doctor examined me for fifteen minutes and then said he agreed with my doctor.
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