Thursday, March 17, 2011

The Social Security Administration and Compassionate Allowances

Yesterday the Arthritis Foundation addressed the Social Security Administration in an effort to have RA added to the Compassionate Allowances list.  Below is the email that I sent to lend my voice to this cause and I urge you to send  your own email to: Compassionate.Allowances@ssa.gov

Good Morning,



Yesterday you heard testimony from Dr. Gall regarding the debilitating nature of Rheumatoid Arthritis in this country. I am writing today to add my own voice to his testimony.


I am 43 years old. I began working and received my first paycheck when I was 13. I am old enough to remember when conventional wisdom was that you would work for 25 or so years with a company and retire. We all know that in this day and age, and in the current economy that is no longer an option for so many of us.

Almost 6 years ago I was first diagnosed with Rheumatoid Arthritis. At that time I was married, raising a teenager, attending college and working two full time jobs. Since the time my symptoms began showing themselves I have had to drastically scale back my life. Though I am still married and the teenager is now an adult, I am no longer able to carry two full time jobs and college. In fact, I have additionally been diagnosed with Fibromyalgia and I am "down to" one full time position and often have to modify my work to accommodate my illness. The chronic pain and constant exhaustion make it difficult to be as 100% hands-on as I was even as much as five years ago.


I never imagined that in my early forties I would be in pain every day, have no energy, have to rely on mobility aids and have permanent damage to my hands, feet, hips and back.


I never thought that, in my early forties, I would be truly afraid that I would be unable to work long before traditional retirement age because of an incurable autoimmune disease.

I never thought that I would be afraid that when I could no longer work it would take so long to go through the "system" and receive benefits that I have been contributing into for over 30 years that I could potentially become destitute between the time that I could no longer work and when the application and approval process are complete.

The age of the internet has opened up a world of shared information and the information coming in from people who have gone through and are in the middle of the disability process who have the "invisible" illnesses that I share is incredibly disheartening. Lost homes, inability to pay their utilities, lost health insurance due to inability to afford the premiums which in turn means that they are unable to afford medications; these are terrifying scenarios to someone who has worked hard my entire life. The only option beyond this is continuing to work as long as the employer will allow causing far more pain and damage than is necessary unless there is reform in the system.

I also wanted to note that our medications are beyond expensive. One medication that I am currently on including the administration of the infusion is over $3000.00 a month. This does not include the five other medications that I take on a daily basis just to maintain the ability to be productive. I give thanks every day that I have the health insurance that I have through my employer because if I were not working and did not have that insurance and that job- I would not be able to afford one medication much less the current combination.

I urge you to add Rheumatoid Arthritis and other debilitating autoimmune diseases to your Compassionate Allowances group and I thank you for your time.

Julie E. Faulds

1 comment:

Margie said...

Thank you for such a great post. I was diagnosed 4 years ago and can sympathize with your situation. Fortunately I was approved recently for disability. I drew my first real paycheck at age 16 and worked my entire life. I used to work a 40 to 60 hour week, then cut back to 32 hours a week, and finally had to give up working. I am so thankful that my husband has excellent retirement insurance under which I am covered. I am 61 years old - my mother got RA at age 36, I was 57 so I am thankful that I was able to work and lead an active life for many years.