(From the ME/CFS Message Board’s “Social Security Information” Message String.)
I received SSDI (Social Security Disability Insurance benefits) approval two months after I applied.
Shocking, I know! I waited four years after I stopped working before I finally applied. That is not advisable! Here is my advice, based on my experience:
• Before you apply for disability benefits, look at your Social Security Statement, showing your earnings history and benefits estimate, that is sent to you every year.
You can get a copy at your local Social Security office if you don't know where you put yours. This is the document that shows your wages over your lifetime. Check it carefully, and get corrections made if needed. Once you apply, they will not/cannot give you this statement.
I found out that my file was frozen while I had an open claim. Once it was approved, I was able to get my statement. Make sure all your work income is on there, as that determines your benefit amount.
• Apply as soon as you can and don't let the application expire. Retroactive benefits are paid for only one year back from the date of your application. It is very common to be denied twice; then the third time, you appear before a judge at a disability hearing. This is where most people are approved. Don't give up!
• Build up a medical file. I used the local county's indigent care program to get free medical care, since I did not qualify for Medicaid.
If you need financial help to see doctors, find out if your area has this type of program. You could contact a public hospital and ask them if they are aware of any programs like the one I was on, offered by your city, county, or state.
I had to submit financial information and a denial from Medicaid, so that was my first step and quite easy.
You must see doctors to build a documented case for your claim.
• Give detailed examples of your limitations. One of the questionnaires is about your limitations - spend time on this, be specific about how your life has changed, how easy/difficult it is to care for yourself, your family, your house, working, sleeping, eating, showering.
Mention how it affects your friendships, relations, hobbies, quality of life. I was very specific. I used several pages to detail little things - even how I have to lie down after I take a shower, to rest before getting dressed.
• I registered with the Department of Assistive & Rehabilitative Services. I insisted that I wanted to work (which I did - and still do!). [There is a list of links to the websites of similar organizations in each state, plus contact information, at the HHS Office on Disability website - www.hhs.gov/od/topics/Resource%20Locator/resourcelocator.html]
I was accepted as a client, then I was sent for various evaluations to determine my limitations and abilities. Their doctors determined that I was not a good candidate for work - the money they would spend to help me work from home or have special accommodations at a job would be wasted, as I would get too sick too soon.
I was scheduled for a test of my physical ability. As it turned out, my SSDI claim was approved the week before I was supposed to go in for the testing, but I made sure that they knew my mom was coming in from out of town to care for me and my son after I crashed, since I knew I would.
I requested that the testing be done over several days, but they refused. I made a big deal about that. I can't be sure, but perhaps the fact that I was willing to do the test but concerned about the post-exertion fatigue would have helped support my case if it hadn't already been approved.
• If you get referred to a psychologist, ask to be sent to a neuro-psychologist. The one I was sent to did the usual mental interview, plus the IQ tests. She also did the hand grip test. I think this was a big key in approval of my disability claim. It proved weakness in my upper arms.
• I stressed that I would have post-exertional fatigue, and I requested an appointment the next day so they could document the change. I made a big deal about that - how the test was not fair because they were not tracking me the next day. They refused the request for the next-day retesting, but I think my concerns were noted.
• I attached the document - SSR 99-2p: Policy Interpretation Ruling Titles II and XVI: Evaluating Cases Involving Chronic Fatigue Syndrome - to my package. The link is here - www.ssa.gov/OP_Home/rulings/di/01/SSR99-02-di-01.html
• I attached a form from my state Dept of Health & Human Services - on which my doctor rated me with temporary disability. My doctor was not very helpful and would not help me in any way with my medical file or write any reports, but this was a simple form that he just signed - he didn't have to write up a report. I don't know if that helped but I imagine that it did, despite its being rather lukewarm about my being unable to work.
• I had help filling out the questionnaire and I noted that. Also, I made a big deal of needing ample time to fill out any paperwork and asked my Social Security rep to send me any required forms early, as it would take me forever to fill things out due to brain fog.
• I received help from the Yahoo group called Disinissues [The CFIDS-ME Disability Benefits Information Website at www.cfids-me.org/disinissues offers a great deal of information, including a ‘good lawyers list’ and the Disinissues discussion list.] They are a wonderful group and they helped me navigate and gave me confidence.
I did not use a lawyer or service. Actually, I applied to get a file open; then I was going to use Allsup [www.allsup.com - an organization that provides Social Security Disability Insurance & Medicare representation] or find an attorney. But I was approved within 60 days so I didn't have to find help, which was good as I didn't have to pay anyone.
• I don't consider my medical file having anything obvious in it - typical invisible Chronic Fatigue Syndrome/Fibromyalgia. Not much testing was done - some positive viral tests and Mycoplasma pneumoniae, but that's it.
Don't give up - M
Note: This information represents one patient's personal perspective, and is not meant to take the place of professional legal advice.