We get SSD, then we begin to disintegrate

Discussion in 'Financial, Disability and Legal Resources' started by TwoCatDoctors, Jun 5, 2011.

  1. TwoCatDoctors

    TwoCatDoctors New Member

    We fight so hard to get Social Security Disability. When we get the award of SSD, we are so happy and feel good. But much later I felt the finality that no matter how much I tried, I really was permanently disabled and would not recover. I kept thinking that I had always conquered so much in my life, that eventually I would conqure the disabilities too--didn't happen. After many years, I finally gave up my car handicapped plaquard that I put in the front window and got a handicapped license plate, which was because I faced I couldn't conqure the disabilities.

    As the years passed, I found out a cruel fact. That when you have disabilities, it seems to weaken you and you get more disabilities as the years go by. I remember being disabled for 6 months and getting the systemic lupus diagnosis and feeling stunned and wondering where did it come from. As the years have passed, I have been accommulating other disabilties and in talking to other disabled, it seems all too common. I don't even mention the name of the new disabilities now because I feel that doing so will give them power and strength and I'm trying to deal with them and try to force them to not be as strong.

    So with being awarded SSD comes that great feeling of success, but it will also probably bring the curse of more disabilities to you. Sorry to tell you about that.
  2. Mikie

    Mikie Moderator

    Even before getting my disability, I faced the disability mindset paradox. I used denial for sooo long to keep going even when my body was trying to tell me I was sick. When, one day, I simply couldn't keep going, I had to face facts. In trying not to let my disabilities win, I had been used to doing my best to look and act "normal." In order to win my case, however, I had to give in and feel my illnesses and look as sick as I felt. At the same time that I was seeking medical help to feel better, I was seeking docs willing to attest to the fact that I was too disabled to work. Instead of looking my best at my hearing, I had to go looking as I did when I was home too sick to work. My atty. said it was important for the judge to see me as I now looked. I also felt the "stigma" of being disabled when I won my case, even though I was very grateful and happy to have won.

    I was still determined to get better and spent 11 years trying all kinds of things. I finally got to where I could work part time and still receive my disability. A year ago, I had to quit as I was getting sick again. This time, it appears that, in addition to CFIDS/ME and FMS, I have Sjogren's Syndrome. I can really relate to your getting Lupus. It never occured to me that another illness would come along. It was like getting kicked in the stomach. I'm so sorry that you have picked up another illness too. I pray you find healing.

    I had planned to work another four years when I was forced to quit. It has really thrown a monkey wrench into my financial plans. I feel lucky for what I have as there are others worse off than I. I'm back into fighting mode to try to recover from yet another illness. I will not recover from the financial setback.

    Not whining, well, not too much anyway :) I just wanted to tell you that I totally understand what you are talking about. The cognizant disonance we suffer as we play two opposite roles is stressful and stress is the worst thing for us. Not long ago, I got a call from one of my Mom's best friend's son. He asked how I was. I don't want to always be "sick," so I said I was fine. He then said that I should be able to visit and take his mother out of the nursing home where she now lives due to Alzheimers. If I weren't feeling so awful, I would be glad to. I had to then backtrack and tell him I was too sick to do that but would visit her when I could. I'm sure he thought I was lying to him. He has no right to expect me to do that but it stressed me out to have to backtrack like that. Now, when people ask, I say that I'm OK.

    I attend weekly condo meetings and I do my best to look fine and act fine. Only a few people know that I'm not fine. Some of them don't believe I'm not fine. Some have even made unkind remarks. I don't let the ignorance bother me. We are not how we feel any more than we are how we look. We are the sum of our character and our willingness to love and give service to others when we can. Perhaps this is one of the lessons of being ill. I know that finding balance in our lives is important. We are always performing a balancing act between being disabled and knowing that our disabilities do not define who we are.

    Thanks for bringing up this subject. It's really important to face.

    Love, Mikie