Thursday, September 29, 2011

Sjogren's and Disability

I have been reading a lot of posts of the Sjogren's Syndrome Foundation Facebook page lately about disability for this disorder. People seem to have a lot of questions and comments not only about the process itself of obtaining disability, but also about the journey which is at best, extremely stressful. Having gone through the arduous process myself, I thought it might be helpful to blog about my experience in the hope that someone may find the information useful or at the very least, know that they are not alone in their struggles and frustration with getting through this system.

My journey with disability began in 2008 when I was put on short term disability through my former employer. After a period of time (I believe it was ninety days), it converted to long term disability which was a benefit I had elected through my employer, thank god. What that meant was that a private disability company, contracted through my employer, paid me sixty percent of my previous year's gross income. Of course I had to get documentation from my doctors and fill out a million forms.

As time went on, it became apparent that I was not going to be able to return to the workplace anytime soon. My long term disability company (Aetna) required that I apply for Social Security Disability (SSDI). The way it was explained to me was that if I was approved for SSDI, Aetna would subtract the amount that SSDI paid me every month from the amount that Aetna paid me so that I would always be earning that sixty percent. I also would be eligible for Medicare if and when I was approved for SSDI.

I first applied for SSDI in October 2009. It required a lot of forms, phone calls, and patience. From what I have read and heard, most people are denied when they apply for SSDI the first time. This is why I was so shocked when in January 2010, I was approved for SSDI. However, the joke was on me. After being on SSDI for about six weeks, I was notified that I was actually DENIED and that my SSDI claim was accidentally approved. The amount of drama and stress this created in my life cannot really even be put into words. It affected my disability through Aetna and caused financial havoc for a year afterwards. I mention this because the only reason I got through it was due to meticulous record keeping on my part.

I appealed the first denial and was denied a second time. The reasons given had to do with the fact that the doctors reviewing my case through Social Security felt that despite my illness and limitations, I should be able to do some type of sedentary work on a full-time basis. I constantly had to justify my symptoms, my illness, and my limitations. A very demoralizing experience I can tell you.

My third appeal involved an administrative hearing with a judge. I was scared out of my mind. Mostly because I didn't think that I would be able to handle it if I was denied again. I was fortunate enough to have representation at the hearing by a company called Allsup. They are an organization which assists people in obtaining SSDI. I was even luckier because it was Aetna who provided the service free of charge. They had their own interests in mind by supplying this representation because if I received SSDI, that would be less that they had to pay me. However you have to take your help where you can get it and I knew it would benefit me in the long run.

I went to the administrative hearing and in May 2011, I was finally awarded SSDI. I think the best part for me was that I was just relieved to have the process over with. Despite the fact that both SSDI and Aetna review my case periodically and I still could have problems with either in the long run, at least this part of the process was over.

There are many things I learned along my journey of applying and receiving SSDI and they are as follows:

1. As mentioned earlier, keep meticulous records. To start with, get copies of all your medical records. As someone who saw twenty plus doctors, I realize what a task this can be but it pays to have them as a reference. Knowledge is power! Also make sure to document every single interaction you have with anyone related to your claim, especially the Social Security adjuster. Keep track of any monies that are given to you or taken from you. Trust me, mistakes can and will be made so impeccable documentation is a must!

2. Get a doctor in your corner. This is especially important with autoimmune disorders as many times they are not accurately diagnosed and/or symptoms can vary so greatly. If you have a rheumatologist, they are your best bet as they are most familiar with Sjogren's Syndrome. Make it clear to them that you are applying for disability and that you would appreciate clear documentation in your record as to why you are disabled. When I was approved for SSDI, the judge sent me a very long and detailed letter about how he came to his decision. He said in the award letter that there were two compelling pieces of evidence in helping him make his decision and one of them was letter that my rheumatologist at the time had written about why he thought I was disabled.

3. Many people are under the misconception that SSDI is given out based solely on your diagnosis. I found as I went through the application process that this is not where their focus is. Honestly, I don't think they care if you have six months to live. What the folks at SSDI are concerned about is how you function on a day to day basis. Make sure to stress this when you are speaking with the folks at SSDI and on your assessment forms.

4. Know why you are disabled. This seems like common sense but you would be surprised. When I was preparing for my hearing, I spent a lot of time thinking about WHY I couldn't work and I discussed this with my doctor. I can have days and even weeks where even though I still have symptoms, I can get myself through a day and be productive.  However this is because I usually control my environment and all the factors that lead to a flare-up including climate, diet, schedule, and stress. This does not happen in the workplace. More importantly, I cannot reliably and consistently get myself to a job on a full-time basis due to flare ups of symptoms. There is no employer that I know of that would be OK with being out of work as frequently as I would be. Stress these facts during your hearing. It could make all the difference.

5. Be honest. This is critically important. When you are sitting at a hearing, any decent judge is going to be able to tell if you are exaggerating your symptoms/situation. If you are truly unable to work, tell the judge why. Make sure to not leave out any details. Everything counts. When I received my award letter from the judge and he mentioned those two compelling pieces of evidence that helped him make a decision in my favor, the second piece of evidence was my testimony at the hearing. He said that he found me to be forthright and honest about my situation.

The SSDI process is not easy. It takes time, patience, and diligence. Not everyone who needs disability is granted it and there are people receiving benefits who don't need it (this is not a judgment, but a fact from my conversations with said people). However like everything else we encounter when faced with such a complicated disease like Sjogren's, we must fight for what we need in order to survive and yes, even thrive.


You can do it.

Photos Courtesy of Google Images


  1. Christine, our stories are so similar! I can’t remember if we have talked about that in the past or not, so forgive me if I am repeating myself. Even our time frames are similar! I too was working when I got sick, and thank goodness had taken out Long Term Disability. I just cannot stress this enough when talking to others. I originally assumed that the only benefit was the time that I was unable to work. I had no idea that for the lifetime of my disability they would make up the difference of what SSDI lacked. For me, this was worth its weight in gold. I did not start working in my career until most of my kids were grown. So my lifetime average wage would have been fairly low. (which is kind of how SSDI is determined) Later in life, when my career took off, I was earning a substantial amount of money. If I would have only had SSDI, my income would be that lower average. But since LTD bases the payment on 60% of what I was currently earning (which is very close to what you take home after taxes anyway!!) my payment is much higher.
    You hit the nail right on the head with the work involved, the fact that it is incredibly demoralizing and the amount of drama involved – as well as your advice about records. In fact, I have six very large, three ring binders FULL of my records over the past three years. They are full of clinic notes, hospital records, labs, imaging reports, letters, medications and correspondence. In the end, what you found true was likewise the same for me – the actual way in which my illness affects my daily life is what prevailed in my case. Thankfully, I had found some information on line that actually gave suggestions of what to document in that regard. I had document after document that accounted for what my life was like prior to my illness and what it was like after. To the smallest detail.
    Luckily I was approved within three months. I cannot imagine finding out later it was a mistake. Every time either SSDI or my LTD reviews my case (and LTD is relentless!!) I go through a certain amount of emotional upheaval. My husband is very good at making sure I do not give it so much of my energy that I get sick. It’s easy to do!
    Thank you for talking about this. I hope your post elicits some good discussion!!

  2. I don't think we ever talked about the disability issue but then again, my memory is not the best either! I do get worried about the disability renewals. I have one coming up in Jan. for Aetna. Mostly I am concerned because what would I do if all of a sudden they yanked it from me? I know I am disabled at this point, but I am not the one making that determination.

    I am glad you were approved so quickly! This post has elicited some good conversation on the Facebook Sjogren's Syndrome Foundation page which I am very glad about. The more experiences and information we share, the better we become equipped as patients to handle all of this autoimmune business!

  3. I was diagnosed with depression, anxiety, and bipolar disorder and after having a breakdown and being fired from my job because of it, my doctor started the paperwork to get me on disability and then helped me file for SSI.

    Amazingly, I passed the medical part the first time with flying colors. Unfortunately, I had just received a large settlement from a car accident, and because I had more then I think it was $2000 in my bank and at the time had 2 cars, I was denied.

    I appealed and was denied. I basically had a fit, because at this time about 5 months had passed, most of that settlement had gone into paying bills, one car was totaled in an accident, and the other other I sold for a few hundred to make sure I could pay bills a little longer.

    After what I was told would be my final appeal, I was amazingly approved and was given back pay for a couple of months previous as well. It seemed like it took forever, and it was incredibly stressful, but eventually I was approved.

  4. Christine,
    Kind of an interesting point, since our LTD companies sound similar (mine is The Hartford), the first year I had a review every six months. This was to determine if I could do the same work I had done when first approved. Then, after the first year they have this rule that says they can then review you for ANY kind of work. This would include even the most minute, sedentary work. So, for example, if they determine you can sit at home and make phone calls... then you have to look for that type of work. I am in the process of that review right now. I met with my doctor and we filled out the forms together and he is making it very clear that I can not do ANY kind of work - for all the reasons that you stated above. This was another piece of LTD that was not explained to me at the start. I knew there would be periodic reviews, but I did not know that the criteria would change as time goes on. My experience, since my initial determination for both SSDI and LTD, is that LTD is much more scrutinizing. I have heard some terrible stories about people being "watched" or set up by these companies. To the point of video taping people coming and going from their appointments. It makes me very sad.
    Toni Bernhard speaks to this in her most recent Psychology Today's worth a read.

  5. Theresa ~ That is the review I am up for in January with Aetna-the one to determine if I can do ANY type of work. It makes no sense as the government (SSDI) just determined that I can't. I have heard stories about the disability people stalking people as well. That is so sad and unfair as you cannot determine ANYTHING by watching someone from a distance when they have an autoimmune disease that oftentimes acts like an invisible illness. I am just bracing myself....

  6. Thank you so much for taking time out of your life to write this blog. I barely have time (or energy) to respond to emails and facebook messages, let alone write encouraging and inspiring words! :)

    I was diagnosed in March of 09 with Sjogren's after a very long investigation (since 1-1-2000) of why I was always sick. All kinds of weird things that baffled the docs. I am one of the, I'm sure, hundreds of people who have been forced to file for SSDI due to Sjogren's. I'm on my 2nd round. My first application was September of 2007. It's been HELL!

    Again, thanks for your words of encouragement!


    1. Hi Andrea,

      I am so glad that you found your way here and that you found the blog helpful/encouraging. It took me 3 times to get approved for SSDI so hang in there. It is a brutal process but worth it in the end.

      I am sorry it took you so long to be diagnosed. Took me 3 1/2 years. I cannot even imagine the frustration with it taking nine!

      Have a great weekend!

  7. PS - found your blog in one of my "google alert" for Sjogren's emails.

  8. I envy the fact that you all seem to have had the support of your rheumatologists in filing for disability. I have severe chronic joint issues, fatigue, depression, and right now am awaiting surgery for foraminal ridging (which my dr. says is abnormal bone growth due to Sjogren's) spinal stenosis and herniated discs. I have been on medical leave for the past month and can't imagine returning to my job as a teacher, so I asked my dr. to fill out the paperwork for a disability retirement on my pension which will allow me to retire a little early (I'm 62.) She told me that she can't, because joint issues are not permanently disabling. I was devastated - I need two doctors to file for me and the one that I see every 6-8 weeks for all my Sjogren's issues doesn't believe it's debilitating.

    1. Hi Lynn,

      This is just my opinion for what it is worth. A rheumatologist that does not think that joint issues cannot be permanently disabling does not seem to be a doctor worth keeping. Is it possible to find a new rheum? Also you mentioned you need surgery. Can you have the doctor doing the surgery, who must be some type of orthopedic doc, and your primary care do the forms since you need two different docs to do the forms? Just a thought....

    2. Thanks for your response, Christine. Up until now I've been very happy with my doctor, who has always been very supportive and caring. Unfortunately I think it has a lot to do with the way the form is worded. She has to certify that I can't hold any job; the pension specialist said that it actually means I'm unable to continue in my present job, but that I could work part-time to augment my pension. She says that my Sjogren's is not enough for her to sign the paperwork. The surgery is a recent issue and I'm only seeing the spine surgeon for that issue, and until the surgery and recovery is complete he is very unlikely to prejudge its outcome. I also have an endocrinologist for other problems, but I'm caught between a rock and a hard place. Put all of my medical issues together and it's a very strong case. But each of my doctors can only report on the condition they are treating me for.If I try and find a new doctor then they won't have the years of having treated me, and it was hard enough to find a rheum. to begin with. My primary care doctor is new, and she has to rely on what the specialists tell her. I haven't given up, but I'm not optimistic.I'll have to go back to work after the surgery and deal with it. Thanks for listening. No one understands how bad Sjogren's can be (or has even heard of it) except other people who have it, and I've yet to meet someone who does.

  9. Hello, I have sjogrens I have lost all my teeth due to dry mouth. But what is keeping me from doing my job is my severe dry eyes. I find it hard to see I am constantly putting eye drops in my eyes. My eye specialist says there is nothing he can do other than try to eleviate the symptoms. My job requires a lot of reading and a lot of driving, I really feel unsafe driving because my eyes see foggy and blurry most of the time. I have moments of clear seeing but it does not last very long.My eyes constantly burn and itch and are watery or feeling like some thing is in them. I feel my doctor does not take me seriously I told him I was afraid of losing my job because I miss a lot work due to my eyes. His response was a shrugg of his shoulders and he basicly told me he did not know what to say. He is going to put tear plugs in next Thursday to see if it helps. I feel lost, I am intimidated by Doctors it hurts my feelings when they behaive indifferrent to my situation.

  10. I am currently on FMLA,(Family medical leave act) but this only allows me a certain amount of days from work. Every day that I call in sick I do not get paid for that day. I am worried of losing my job, and I am afraid of doing my job because of all the driving that I have to do, in and out of traffic all day long. I am also afraid of hurting someone. I do not know what to do.

    1. You never know, the tear duct plus may help. They have helped me in the past and I know they have helped a lot of other people. More importantly,my personal opinion is that you would benefit from finding an eye doctor that you feel more confortable working with. Maybe your rheumatologist might know someone to refer you to.

  11. Wow that was odd. I just wrote an incredibly long comment but after I clicked submit my comment didn't appear.
    Grrrr... well I'm not writing all that over again. Anyways, just wanted to say superb blog!

    1. Thank you!

      I moderate comments which means they don't show up right away, but I didn't see the comment in my moderation box...not sure why.

  12. Incredible points. Solid arguments. Keep up the amazing spirit.