My SSDI hearing is coming up at the end of the month. I would greatly appreciate any advice anyone has about these hearings. I have a lawyer but we haven't met yet to prepare for the hearing and she has never represented a Lyme patient.

I would love to hear if anyone has any success stories? Horror stories? What to expect? Anything that may help.

My worst symptoms are pain and fatigue. I have minor cognitive issues but they do not prevent me from working.

Thank you,

The key is to have clear documentation in FUNCTIONAL terms to document why you cannot work. You need to make sure you have things like the following:

A letter from your doc describing your FUNCTIONAL limitations. Not symptoms, but how your function is impaired by your illness.

Get a good Lyme symptom list and mark your symptoms. Then, using this information, explain how each symptom impacts your function.

A neuropsychological eval if you think your cognitive problems impact your ability to work in any way.

A functional capacity eval to document your physical functioning limits. And the impact this eval had on you in the days following the eval.

If you can get it, ask your former employer to do a letter for you describing your problems on the job. Again, functional problems. Exactly what you were having problems with, and how they prevented you from performing the essential functions of your job.

Do a narrative describing your functional limitations. What your typical day is like. Again, in functional terms. Not "I have fatigue", but something like "I cannot fold clothes and do other light housework for more than a few minutes at a time, as I get so exhausted I must sit down".

Make a list of all meds and supplements you take and side effects of these.

It's the accumulation of what you cannot do that makes you disabled. If you can't do it 8 hours a day, 5 days a week, then tell them so.

Here are some resources that helped me get my SSDI without having to go to appeal.

Disability Info & Resources

Completing Disability Forms

Five Crucial Steps to Winning your CFS Disability Case

Trying to Look Good When You Feel Like Crap: Don't

Daily Activities Worksheet (PDF)

To anyone trying to get disability,

IT IS NOT THE DISEASE YOU HAVE THAT THEY ARE LOOKING AT....IT IS WHAT THAT DISEASE, WHATEVER IT IS, THAT PREVENTS YOU FROM DOING THINGS...THAT IS WHAT THEY ARE LOOKING FOR.

It is you limitations, not the disease, that they will look at.

In getting the very best letter your doctor can write, you can and SHOULD write your doc (PCP and LLMD are both needed) a letter explaining how this disease has affected your life. This allows you doc to then see just how your life has been affected by you disease.

Remember, this is very important that you get the "right" letter from you doc. Both, my LLMD and my PCP thanked me for doing this as it made their job of writing the letter much easier.

List all the things you can no longer do...in that letter state anything you are no longer doing because of this disease...from no longer meeting friends to lunch to just how long it takes you to get dressed for the day or, if you can't get dressed on some days...list that.

Talk about your troubles with reasoning, thinking, following through with things...taking directions, etc.

I even put in there that I had never been able to take my granddaughter to the picture show....or, if now, I would put how I have never been able to pick up my newest granddaughter.

The list should go on and on...

Again, it is not your diagnosis, unless you have certain Leukemias, etc. you should expect to be denied the first and prehaps the second time. Do not give up, but, do the things they want to hear.

REMEMBER IT IS NOT THE DISEASE, IT IS THE LIMITIONS THAT THE DISEASE HAS PUT ON YOU THAT WILL PREVENT YOU TO WORKING AND GET YOU APPROVED!!!

If you can express that to your physicians, then they can and will be able to write you a great letter that will express these things to the Judge or reviewer, and, of course, your stacks and stacks of medical reports...you must have ALL of them.

Even save all your empty prescription bottles...mine now take up a complete cabinet.

I was denied twice and when the Judge got my papers, along with my docs statements, he didn't even require me to meet with him...he just approved me right then and there.

I come up for review in Dec of this year and will be bringing with me all my hundreds of empty prescription bottles with me. I plan on him seeing them and telling him that if I wasn't that sick, then why am I taking all these prescriptions. I take more than my 86 year old mother.

One more thing, they really want you to see a doctor AT LEAST once per month...if you are not, then you should start considering doing just that.

I hope that this helps you and good luck.

UP it goes!