What conditions to list for SSDI?

[EMilo]

Hi everyone,

This is my first time posting on this forum, but I have been reading for over a year and I am very grateful for all your help. I am a 40-year old woman and I got sick a year and a half ago and was diagnosed last summer after I had to leave a career that I thought would be forever. I thought I would get better enough to find a less stressful job, but I have steadily gotten worse and now, mostly bedbound, I finally started the application for SSDI. I was by far the main bread-winner in our family, so I'm worried we will lose everything if I can't work again. I got as far as the section where I list my conditions and I have no idea what the best course of action is.

I have ME/CFS ~ do I stick with only this condition? Or would it be beneficial to list the anxiety and depression that have emerged in the last year because of this disease (both I think could be clinically diagnosed based on what my therapist says). I also have "post-infectious IBS" (my first Dx when this all started) and OI/POTS (but this hasn't been Dxed offically, but the fainting and dizziness and heart rate problems leave no doubt) ~ should I list those? Finally, right before coming down with ME/CFS, I was Dxed with autoimmune urticaria/angioedema and a few years before that had toxic multinodular goiters on my thyroid which have supposedly been taken care of with radiation and hormone replacement. Should I list those conditions?

I'm sorry for the long message. I tried to bold the important parts. Thank you in advance for any help. I appreciate you all!!

 

[aquariusgirl]

I would get an advisor to help you fill it out.. Sarah, the moderator over at SSdisability yahoo group. consults for a very reasonable fee.

 

[*GG*]

I agree with Aquariusgirl, consult with lawyer, they will tell you the best avenue to approach this in your area. The judges who rule on these things are different, dependent upon where you live.

GG

 

[kurt]

I spent two years filling out forms, consulting lawyers, arguing with the SSD office, reading everything I could find on getting SSDI for CFS, and my conclusion was to just go with CFS, nothing else. I decided that adding more diagnosis might show how many doctors I had visited, but might confuse the medical issue. And that worked for me.

I had one good doctor who believed in CFS and said I was disabled. And I had a few tests that showed typical CFS abnormalities (low adrenal function, etc). The judge seemed to ignore the prior doctors and the mountain of tests, and just focus on this one doctor's conclusion. So that was important, to find a CFS-believing doctor.

Also, I believe some good character references were important. You need to be able to demonstrate that you have a good work ethic and would not be faking disability.

Remember that winning SSDI is about proving that you are DISABLED, and not about proving that you are sick, or proving that you have CFS. The SS is required to give disability to disabled CFS patients. You just have to play their game, and if/when their SSA doctors say you are well, you have to provide contrary evidence: demonstrate that you have good character, good work ethic, are disabled, have medical opinions/evidence that disagrees with them, and give evidence that you are not faking sickness.

One other point, my judge I think was on my side, but he needed to respond to the SSA doctors, so he brought in an occupational specialist to my case, which kept the focus on my level of disability rather than on CFS. And that I think was critical. Any evidence of your inability to sustain FT employment is very important I think, maybe equal to the medical data.

Good luck, you can win disability for CFS/ME, but the process can be very annoying... just don't quit, work on your case every day until you win...

 

[ahimsa]

I second a lot of what Kurt said.

Your specific diagnosis is pretty unimportant when it comes to filing for SSDI (well, unless you have one of those "listed impairments" that almost automatically qualify for disability benefits).

The important thing is to focus on how your symptoms impair your ability to work. Think of lots of concrete examples. Make sure you fill out all the forms or answer questions with the idea "Can I do this on a regular basis, 8 hours a day, 5 days a week?" and NOT "Can I do this once and then rest for a few days to recover?" Answer "No" for anything that you can only do once in a while and then have to take hours (days?) to recover.

I had a tilt table test (TTT) with clear abnormal results that proved I had NMH. And I listed OI/NMH on my forms. I don't know for sure, of course, but I think the TTT helped me get my disability benefits. So you might want to look into getting that test.

They say that almost everyone with ME/CFS gets turned down once by social security. But I got my benefits, without a lawyer, on my very first application. I had a lot of medical tests in my file. I also had a 10 year history of trying to keep working (e.g., take a medical leave, return to work, repeat...) after my first TTT showed that I had NMH.

Okay, that's all I can think of right now. Best of luck to you!

 

[EMilo]

Thank you so much for your advice, everyone! Sorry it took me a while to get back here. My sleep has vanished and the resulting flare in symptoms has me immobilized.

My list of diagnoses is long~ I thought it might give me more bang for my buck, but I will take into consideration what you say, Kurt, about sticking to CFS. I wonder how hard it will be with my doctors ~ my GP knows nothing about CFS and my integrative doctor doesn't "believe in labels"!

Character references! This never occurred to me. Well, I was a workaholic COO of a company until this happened and stopped life in its tracks, so I hope I can find people to attest to that.

Kurt, this may be naive, but what sort of evidence shows an inability to sustain FT employment?? I have been housebound for 9 months, but is that evidence? What do they look for?

I am flat-out terrified of a tilt table test, Ahimsa (great name). I have spent a decade trying to avoid feeling faint and then to force it on myself? Oh, it just seems so unfair.

Thank you again everyone ~ for taking the time and using the energy to help me. We are an amazing community.

 

[WillowJ]

My attorney said things they are looking for are comments from your doctors mentioning what specific things you cannot do (which would be related to employment) such as concentration, fine motor control, speaking correctly, sitting in an office chair, standing, and so forth.

If you have a good doctor and an attorney, the attorney can help the doctor write a suitable letter (interview the doc to get the info, write it up, have the doc check and sign it). Most doctors don't know how to write a good letter.

She said someone who sees you often will trump someone who saw you only once (in case you are worried about that crank doctor who was stupid and wrote something ignorant in your chart - or all 17 of them, as the case may be!).

It doesn't matter what diagnosis you have, but it may matter that you have a doctor who believes you are disabled from something. Or that you have a test which can prove this (VO2Max or repeat VO2 Max, for instance).

There can be value in listing all your diagnosed conditions (I wouldn't use any which have not been actually diagnosed by a doctor), because SSA is required to consider all of them additively. However if you have private insurance a mental-classified diagnosis will bite you (they will limit the time period for payouts). And some people choose not to do this.

it's my understanding that SSA requires proof of diagnosis for most conditions that you list (a test result or whatever is normally used to diagnose the condition), however there are special rules for CFS that test results are unnecessary (because there are no HHS-approved biomarkers and most docs can't figure out what test to run to find significant abnormalities). If you have a positive virus, low NK cell function, or something like that it will be helpful, but it's not strictly necessary if you choose to use the CFS diagnosis.

There are some useful papers here:
http://www.masscfids.org/disability

They say almost no one, regardless of what they have, gets anyone to look at their info fairly until they get to the ALJ hearing. However there can be exceptions. I wished I would have gotten an attorney sooner. Some will say they won't take anyone until the hearing stage, but the one I eventually hired would have taken my case sooner.

 

[caledonia]

As of 1999 CFS is a listed impairment. Look at this document and include it in your claim:http://www.socialsecurity.gov/OP_Home/rulings/di/01/SSR99-02-di-01.html

List everything that you have that is in this letter that you can provide medical evidence for. List everything else that you can provide medical evidence for.

Get your doctor to write a letter using the Disability Evaluation in a Nutshell. My docs loved this pamphlet and were able to use it to write great letters. http://www.cfids.org/resources/free-materials.asp

You can head off the "psychological illness" thing by having your psychologist write a letter stating that anxiety and depression are secondary due to having a physical illness.

How to prove you can't work - you need two tests. A Functional Capacity Evaluation and a Neuropsych Test. The first one tests physical ability to work, and will pick up pain and fatigue. The second one tests mental ability to work, and will pick up memory and concentration issues, anxiety, depression, etc. SS may pay for and send you to these tests. Or if you still have insurance, you can pick out your own doctors and pay for them yourself. Then you won't have to see any SS docs.

The other thing my judge liked was a record of continuing disability. This was accomplished by seeing my doc every three months and documenting that I was still disabled. My lawyer had a nifty little form for this. I had two years of these records by the time I got to the judge.

My claim was so thorough that I was approved "on the record" and didn't actually have to go to my hearing. I never actually met my lawyer either, just worked by phone and mail.

One other point about lawyers. It used to be that you had to be denied before they would take your case, but now there are a couple of companies (Allsup is one) who will take your case from the initial application. This may result in you getting approved earlier. Lawyers are also starting to do this. I believe it's because of competition from Allsup. So going this route is worth a try.

Interview three lawyers or representatives. Go with your gut instinct as to who you think is the best one.

 

[aquariusgirl]

why bother with a lawyer when you can hire an advocate for $50 an hour?

The woman who runs disinissues is a retired SSDI official...Hire her! Its a no brainer.

I filed myself .. was denied.. hired an advocate.. got the right testing.. got a letter from another patient who had been approved.. got my doc to write the same thing.. Bingo. Approved

You need the right tests. You don'[t need a lawyer. An advocate will save you time and trouble.

 

[caledonia]

I used to be subscribed to that list and read it often. I learned so much. I didn't know you could hire the list owner/moderator, or maybe she wasn't offering that service at the time I was there (early to mid 2000's). Anyway, she is a wealth of info, and this sounds like another good option.

Does she take a percentage if you win (like lawyers/Allsup), or is it strictly the $50 an hour fee?

Here's a link to the Disinissues group. http://groups.yahoo.com/group/Disinissues/

 

[ahimsa]

If you have a good doctor and an attorney, the attorney can help the doctor write a suitable letter (interview the doc to get the info, write it up, have the doc check and sign it). Most doctors don't know how to write a good letter.

I second what WillowJ says here. Lawyers can help the doctors phrase things in the right way.

Actually, I hired an attorney to help me with my ERISA LTD claim, not for my social security claim. However, it was during the same time that I was filing the forms for my social security claim. Since the information being collected by my attorney applied to both claims (even though the laws governing ERISA claims and SSA claims are very different) I submitted copies of all the documents supporting my ERISA claim to the social security office, too.

By the way, I did have to pay some doctors a fee (say $100) for the time it took to write the letter. As far as I know they don't get any reimbursement from medical insurance for this type of work (letters, forms) to support disability claims. Some doctors might write letters without asking for a fee but I thought I'd mention this.

They say almost no one, regardless of what they have, gets anyone to look at their info fairly until they get to the ALJ hearing. However there can be exceptions.

I was one of those lucky exceptions who was approved by social security on my first try. My social security disability claim was approved without any denials at all. It was about 8 months between when I filed the initial forms and when the money was deposited into my account (deposit happened before I got the approval letter in the mail, actually).

Yes, I did have to fill out a lot of forms. And I had to go to one medical exam ordered by SSA (which was definitely a waste of tax dollars, a real "quack" of a doctor!). But I guess I had so much supporting data (medical tests, letters from doctors, signed affidavits from co-workers) that they decided to approve me on my first application.

 

[ahimsa]

I am flat-out terrified of a tilt table test, Ahimsa (great name). I have spent a decade trying to avoid feeling faint and then to force it on myself? Oh, it just seems so unfair.

I agree that it is not fair! The whole system is really messed up. At a time when you are at your most vulnerable (too sick to work, grieving over multiple losses) you have to prove to some strangers that you really are sick.

I know it took me a while to not take it personally. ("Why don't they trust me? I've worked ever since I was a teenager! I worked my way through college to pay for tuition! I love my job!") But it's easier to deal with if you realize it's just a stupid bureaucracy that does not understand feelings, only forms/facts/figures. I hope this helps a little bit.

I don't have a good answer or solution (we all know that there are horrible people out there who are scamming the system) but it is very sad that it has to be this way. I will tell you that the social security disability process may seem difficult but it is nothing compared to fighting an ERISA disability claim. At least the SSA folks don't have a profit motive. The ERISA system is the fox guarding the henhouse.

RE: Tilt Table Tests, doctors have learned A LOT about how to administer these tests since I first took a test back in 1995. On another thread there was a reminder that doctors now do not have to make you faint in order to get good data from a tilt table test. You just need to find a doctor who is experienced in diagnosing different types of autonomic dysfunction. They have learned a lot about POTS, NMS/NMH/NCS, and many other types of orthostatic intolerance over the past 20 years.

In short, the Tilt Table Test may not be that bad of a test if you have a good doctor. There's a list of doctors on dinet.org - http://dinet.org/physicians.htm

[Edited to add - map of doctors from Dysautonomia International - http://dysautonomiainternational.org/map.php?SS=3 ]

Another option for disability testing that others have mentioned is the VO2 Max testing. By the way Stevens, et al, are now at Workwell - see http://www.workwellfoundation.org/testing-for-disability/ - and not Pacific University.

I wish you all the best!

 

[WillowJ]

by the way, I did mention VO2 Max, but not everybody can or should do this test. I don't think I could do it without doing serious, longterm harm to myself.