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Never Give Up When Fighting For Disability Benefits!

I was first diagnosed at the age of 48 with RRMS.   In just 2 yrs, I had failed on two of the most reputable first line drugs and ended up on chemotherapy in order to essentially shut down my immune system for 6 months.

I was relapsing at least every three months for those first three years. I lost the vision in my right eye in 2011 as a result of optic neuritis. I even was hospitalized at the Ohio State University for 2 weeks to try plasmaphoresis to get my vision back. Some returned, but it is mostly shapes. I no longer drive.

In February 2012, I started noticing I wasn’t on my game at work. I was the manager of a very busy Emergency Department. I was missing deadlines, forgetting to follow up on things, missing meetings and having much difficulty doing things tat were once very easy. I knew something was going very wrong. I went off work on Short term disability which later turned into Long Term disability.

Knowing that I was facing chemotherapy and knowing I was no longer on my game at work, I made the hardest decision of my life. I knew it would not be possible for me to return. I applied for Social Security at the beginning of March, 2012.

When I applied, the gentlemen taking my application quite frankly told me it was going to be hard for me to get my claim approved. When I asked him why, his response was “you are just too educated”. I have a BSN and an MBA. I left the office thinking of all the patients I had cared for over the last 30 years who were able to get disability for things like back pain, alcoholism and even attention deficit! I was bound and determined that I would win this battle!

Long story short, I was denied 4 times!! I had a 12 page report from a rehab psychologist who did cognitive testing for 8 hours one day. The report was in fact downright depressing showing that my MS had brought about some early dementia, poor short term memory, problems with word finding, difficulty with critical thinking and problem solving. All of those things I needed to do my job. He in fact advised me to appoint a power of attorney and make sure I had a will prepared sooner rather than later. That was just one of my issues they reviewed!

Finally, they scheduled an administrative hearing for me to appear in front of a judge. Interesting though, I recieved a call just one week before I was to appear with news that the hearing had been cancelled and my case approved. Mind you I am very grateful this two year process is finally over for me. I am blessed that my employer has an excellent long term disability program~I am sure there are many people who could not have survived as well as I did.

My point in telling my story is only to encourage those who go through the process to never give up! I truly feel like sometimes this arm of the government tries to see how far tey have to push before you just give up.

You are the only one who knows your body and knows what you can and cannot do. Work with your neuro to get input about your situation and what is best for you. Just another illustration of the frustration of having this incredibly “invisible” disease~while many do have outward signs, many of us have more that can not be seen. For me it is fatigue, cognitive changes, chronic pain which I just have to live with and spasms all over my body that come and go.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • connie
    4 years ago

    Thank you for sharing your story. This story is a lot like mine.
    I am also an RN dignosed with RRMS in the first week of January of 1998. (Happy new year to me ).
    I have worked over 33 years at our small community hospital. I actually volunteered there as well as a candy stripper in my teens. I worked in many departments throughout the years. My favorite and most loved position was as staff nurse in the ED for 16 years. I loved having to keep on your toes the whole shift not knowing what would come through your door. we had only one doctor on duty. The rest of the staff was 1 clerk and 3 RNs. No extra staff. You needed to know what you were doing and able to make split second decisions.
    The 12 – 16 hour shifts became a difficult. I took a position as director of cardiopulmonary and the sleep lab. That went very well at first. Then shortly after I took the position I began having cognitive problems. I also had difficulty keeping on task. Budgets were taking me longer to complete on time. I was taking well over 8 hours working to complete my daily job. I came to the conclusion that I wasn’t doing my staff or the institution justice. I resigned from my directors position after about 5 years. I took a position were starting just starting new. This put me back to an hourly employee .I had a great amount of difficulty with this. I wound up resining my position at the hospital. I thout that was the hardest thing i would ever do. I loved my job. I felt / feel it is who I am. To me my job did help define who I am along with my family and friends.
    So as I soon found out that wasn’t even close to the hardest thing. I have been trying to get SS disability for almost 2 years now. I have a hearing date set up now for February 24th. I find myself having to prove now what I spent years trying to cover up. I am not as good at fighting for myself as I do for others. I am very uncomfortable in this position.
    Not having a very big retirement I am now not making any money. If I don’t get aproval next month I don’t know what I will do. I should be so lucky to have a decision for aproval before the hearing. This is a very heavy weight I am carring now.
    Like you I have cared for people who are healthier then I that have not worked a day in their life. Most very young . Very frustrating.
    I have my fingers crossed.
    If anyone has any pointers to help me I would appreciate it.
    The best of luck to all of you in the same position.
    Thank you again for posting your story.

  • Penny author
    4 years ago

    Connie,
    I will be thinking of you as you approach your hearing in February. The longer I live with this crazy disease the more I realize how difficult it is for others to understand. When people can’t “see” your disability they assume you have none.
    Since I posted this, I have become overwhelmed with fatigue. Honestly I heard people talk about fatigue a lot and had periods of time where I needed an occasional nap. Wow over the last 9 months it has impacted my quality of life! I have to take 2 medications to keep me awake and again people just don’t understand.
    Please don’t give up. There are so many of us who do understand what you are going through. I also know the MS society is working hard investigating the impact of MS on cognition. Hopefully research like this will get the attention it deserves and make it an easier process for people to get the benefits they deserve.

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