Friday, November 16, 2012

Emotional Cost of the Disability Process

I am in the final stages of my final shot at getting Social Security Disability.  I have had ME/CFS for 10 years, applied to Social Security several years ago, and have already been rejected twice.  My lawyer is helping me to prepare for my final hearing, before a judge (by video), next month.  My chances are slim because Delaware has the 3rd lowest approval rates for disability of the 50 states.  Lucky us.  It really comes down to which of the four disability judges you get; some are known for turning down almost everyone.  That is just so wrong, that in the end, it doesn't matter what the merits of your case are but which judge you get.

I met with my lawyer a few weeks ago, and he explained that my case was weak because it relies mostly on self-reporting my limitations - I wrote a narrative explaining what I can and can't do and how the post-exertional crashes and OI restrict my activity level, made copies of 10 years' worth of calendars, data, and graphs, and submitted letters from my doctors.  Despite all this, my case has now been rejected twice, so I am trying to strengthen my case with more medical evidence (like my recent OI test).  Ironically, you have to work very hard in order to prove that you can not work.

Beside the physical consequences of having to put so much effort into filling out forms, gathering and copying documents, requesting letters, etc., I am finding that the emotional cost of applying for disability is much greater than I expected.

For starters, there is the very degrading and dehumanizing aspect of simply not being believed.  I have tried for 10 years to carve out a second career as a freelance writer in accordance with my limitations, and I have been unsuccessful in earning enough money to contribute anything significant to my family's income.  I would give anything to be able to be productive again!  And yet, after submitting all of this evidence of my disability, two sets of reviewers have now told me that I am perfectly capable of working full-time as a consultant, like I used to.  Really???  So, even though sitting in someone's living room for a 2-hour book group leaves me exhausted and useless the next day, Social Security says I am able to manage 8-hour days spent on my feet auditing or teaching or leading groups of people.  It's so absurd it is almost funny...except it's not funny when it is happening to you.

My lawyer suggested getting one more set of letters from my two primary doctors, along with two more forms for them to fill out, specifically stating that I can not sit up for more than 2 hours without needing to lie down and rest so I am unable to manage even a sedentary job.  I met with my primary care doctor yesterday, and she was wonderfully supportive.  She is also angry with Social Security for not accepting all the previous evidence submitted.  She typed another letter, while I was sitting there, which leaves no doubt that I can not work.  She explained to me that she rarely writes this sort of letter, even though she is asked frequently.  She said, "It is rare that a patient is so disabled that they really can't manage any job at all.  I wish the judge could look through the records and see how rarely I have supported a disability claim."  But she did it for me.

When I got home from her office, I found a letter from my CFS specialist waiting in the mailbox for me.  She is also getting frustrated with this ridiculous process and wrote a very strongly worded letter to go with the form.  It was exactly what I had asked for.  So, why did it make me want to cry?

Despite 10 years' of daily experience telling me this, it is still disturbing to read in black and white, "...I deem her prognosis to be poor and recommend total and permanent disability."  Having to face the reality that my illness is severe and permanent is heart-breaking.  I think my primary care doctor (who knows me well) realized this because she said to me very gently, "I'm going to write that your illness is permanent so there is no question of the need for disability, OK?"

There are so many things I want to do with my life!  I want to write another book but have not found the energy or productive time to get further than the first chapter and outline, after five years of trying.  I want to go backpacking again and take long hikes through remote wilderness with my family.  I want to exercise - oh, how I want to exercise!  I almost started crying yesterday when I drove past a sign for Zumba classes - I would love Zumba!  I want to spend time with my friends and family and really enjoy myself and them, instead of always having to be so careful.  I want to write and travel and hike and,!  I used to define myself in part by my professional success.  I became an expert in my field, wrote a book, gave talks at conferences and meetings; I enjoyed my work and was proud of my success.  Knowing that is all in the past is heart-breaking.

I think this is all hitting me extra hard because I haven't been feeling well lately.  In fact, in preparation for my doctor's appointment yesterday, I looked back over the last two months (still keeping those records!) and realized I've been worse since the beginning of September.  So, that makes the emotional stuff harder because I am even more limited and restricted than usual.

I think this process of applying for disability would be difficult even if the process itself were perfect; it's hard to face your limitations in such stark terms.  But the fact that the process is incredibly messed up just makes everything so much worse.  It is humiliating to keep trying to prove how disabled you are, when it seems like no matter what the evidence shows, you will be rejected and not believed.

Well, one way or another, it will be over a month from now, but I think the grieving will go on.


hkd said...

Dear Sue - this made me cry - the emotional and physical toll of applying for disability is on top of anyone's list for a kind to yourself and realize how much focus and attention to detail this process has taken and when you receive what you deserve, may you relax and it bring you a sense of peace -and accomplishment not only for yourself but for future individuals trying for the same are continually pushing the limits of this illness and awareness - and perhaps that Zumba class - well maybe its time to just go and listen to the music and tap your toes - not what we want - but what you deserve to be a part of...wishing you all the best. h

Anonymous said...

Sorry babe.
Love, ken

DolceVita said...


Anonymous said...

This was hard for me to read as I both feel for you and had a lot of bad memories of my own experience come up. I've been through this process too and felt all the same things you're experiencing. It's so hard and I'm glad you're expressing yourself here and hopefully getting some support, because it most certainly is needed during something like this. Wishing you the best and great success in winning this hearing. Sounds like you have a lot of support from your doctors so I hope that will tip things in your favor.

Anonymous said...

CDC sais that CFS is a debilitating and complex disorder...

Shelli said...

Sue, I understand how painful this is for you. I put in so much energy trying to create a "normal" life for myself, working around my disability, that I often ignore the fact that I really am that sick. I know that you do the same. To be confronted with the reality of it is devastating. I wish I could be the comfort to you that you have always been to me. The reason I have worked so hard to adopt an optimistic and realistic approach to my disease is because of the amazing example you set. I pray that this will finally come out in your favor. Hang in there (don't we always?) and good luck.

upnorth said...

Everything you say here is so familiar....I hated having to go through this, it's just a reminder of everything lost dedged up again. I was really lucky (although I did have to leave all my friends in the States as I was told I'd have no chance there with a CFS diganosis). I did get permenant disbility. Partly due to my diagnoses of sleep disorder as that Dr. was really good at helping M.E. patients get disability. The stange this is I thing that my sleep problems are fairly minor, but they showed up well in the testing. So, if it's the OI and POTS that gets it for you, whatever. My fingers are crossed - all of them. And your days aren't over to write a book. I have a similar wish to do that. And I can so relate to your longing to exercise and hike!!!!

Cusp said...

Dreadful dreadful time for you Sue: and you know I understand. The notion of not being able to sit up for 2 hours without pain or suffering would be seen as evidence that you could sit at a work station in UK and would not garner any points.

This is link to the 'descriptors' used in U.K.

You have to get at least 16 points to qualify for any support here:

I really do not understand why disabled and chronically ill people are being so demonised and persecuted: especially people with M.E./CFS. It's so hard to communicate all the subtleties of 'our' difficulties.

Thinking of you and walking with you Sue x

Sue Jackson said...

Ah, my people! I knew you guys would understand. Thanks - as always - for all the support and words of comfort. I feel even worse today, but it really does help to know there are friends out there who understand.

Nap time...


Janette said...

This was heartbreaking to read, Sue, and very familiar from my own life. Thank you for sharing so openly. It kills me how "invisible" CFS still is! It's one thing to feel rotten most of the time. It's another to have to waste precious energy convincing people of that fact. I'm rooting for you!

Jennie Spotila said...

Sue, I have been through this exact same process. I also succeeded in my ALJ Social Security hearing. If you want to talk about either, or both, please let me know. I would be very happy to discuss with you.

D Cunningham in NYC said...

My daughter, age 28, has OI/POTS, CFIDS/ME & Fibromyalgia and has been unable to attend classes or work for about 4 years. She became ill 6 1/2 years ago and has been living with me in a tiny 2-room apartment for the last 2.5 years. We STILL have not applied for disability for her - even though we know it gets harder by the month to get it - because we can't quite deal with the fact that this may, in fact, be permanent; and she should have had her whole life ahead of her.
When she became ill, she was in school with an ROTC contract with the U.S. Marines. She has wanted to be a Marine since she was a young child. And now she spends most of her days in pain and/or exhausted watching TV and reading (which sometimes she just can't.)

You state so clearly that which is her/our biggest loss - the ability to contribute, to NOT be a burden. That makes her more suicidal than the pain and exhaustion. These days we are trying to find FLEXIBLE, no-regular-commitment volunteer opportunities for her; but even in NYC that can be hard.

I will bookmark your 11/16/12 blog entry and share it with others. Thanks to your clarity, maybe we won't have to explain Jess' situation AGAIN to someone - well meaning or not.


Sue Jackson said...

Thanks for your kind words, D. I am so sorry to hear how much your daughter is suffering. Yes, the loss of productivity is one of the hardest parts of this illness.

Even though your daughter is a bit older, you are welcome to join our Parents' group on Facebook - there are LOTS of parents there in the same situation as you - it is a very informative and supportive group. here is the link:

Thanks for writing -


Unknown said...

Good luck, Sue. My doctor said "completely and permanent" twenty-three years ago and it made all the difference. I still think that the future can change, (hey, who is to say that we won't find a cure for paralyzed people or Parkinson's one day, too?)but for today, I'm still completely disabled.

Char said...

Dear Sue, I am reading this today as I have been reunited with my computer after Aubrey's week long hospital stay. Matt and I spent our morning walk talking about applying for disability for the girls. This is the last thing we want to do! Always thought there was another solution but what can you do when you can't DO much sitting up?? We too have minimal medical evidence - but 5 years of experience. Our concern is that if we don't apply now it may be tougher later for the girls. If anything should happen to us - where would that leave them and we are scared of having to support 2 of them forever. Have you thought of applying for Jamie? I always thought "where there's a will there's a way", but I see them have the will - just not the way on any consistent basis. I couldn't even hire them at my own office as they couldn't work regular hours reliably - that is soooo sad. There is the 2 day stress test being done at Ithaca College which should offer some documentation. Over $2000/person and usually creates a tough crash so we have stalled on this, but are now considering it. We also have to decide if we will get another port for home saline treatment - also not covered by insurance and expensive - but concern bc of this recent infection. Oh the choices we get to make!! Any way - I am sorry for all the grief this process has caused you. Know that you have been an invaluable source of information, understanding and hope for all of us out here in cyberspace trying to help our kids. What you DO makes a difference to all of us!!! Thanks! Char

Sue Jackson said...

Char -

We haven't pursued disability for Jamie because so far, he is keeping up with school. Also, he has 3 different tick infections that are being treated, so we have hopes that he will continue to improve, even though we know he has a long road ahead of him.

If you do decide to apply for the girls, I would definitely do the exercise testing at Ithaca. I didn't do it only because I would have had to travel quite a distance which equals a lot more money plus even more exhaustion/post-crash, but I thought long and hard about it.

That exercise testing - available only at Ithaca, CA, and NC - gives you the best shot at being approved for disability. And the cost was $1500 last time I checked. If I lived closer, I would have definitely done it.

Thanks for the kind words!


Jan said...

Hi again Sue,

This will sound very weird, but from my experience, if they government believes that you can work in any way, or at any level, then they will deny you disability. And as unfair as this will sound, if they see that you've been writing a blog for years, then they'll look at that and probably conclude, "She can work!"

I don't know if you can take the blog offline or not, but it's probably hurting your chances of approval.