A Beginner's Guide to RA: Social Security

Patient Expert

"A nation's greatness is measured by how it treats its weakest members."
~ Mahatma Ghandi

A friend of mine once said that applying for Social Security Disability felt like she was declaring herself legally dead.

In our culture, what you do is who you are and if you can't work anymore, it can feel as if you're not a real person. Add the not-so-subtle stereotype that if you can't support yourself, you're a leech on society and the whole thing can make you want to go back to bed and hide under the covers.

New treatments have done much to change the prognosis of people diagnosed with rheumatoid arthritis, especially those who are more recently diagnosed. However, in the 2008 GeneRAtions study, 90% of people with RA said that the disease affected their work in some way. And sometimes, it interferes substantially. Sometimes, your body just can't do it anymore.

But there is no shame in not being able to do it anymore. When Gayle Backstrom, author of I'd Rather Be Working: a Step-By-Step Guide to Financial Self-Support for People with Chronic Illness, conducted interviews with people living with a variety of chronic illnesses about employment, almost all said that they would rather be working -- it's how Gayle found the title for her book. Contributing gives meaning to your life and supporting yourself gives you a sense of pride. But sometimes, you have to find meaning elsewhere. You have to remind yourself that you paid taxes to help others and now it's your turn to be helped. Receiving SSD means you get Medicare and, with the cost of RA medications, this can be an essential part of improving your health. Moreover, as an SSD recipient, you may qualify for vocational rehabilitation training which can help you find another career so you can go back to working, supporting yourself and paying taxes to help others who have no choice.

However, before you get there, you have to steel yourself for a difficult journey. Between filling out forms attesting to being unable to pursue "gainful employment" and letters from doctors detailing your limitations and how there are no expectations of improvement, there's nothing quite like applying for SSD to bring you up against the reality of your condition. No wonder so many wait to apply until they absolutely can't wait any longer. Unfortunately, waiting too long can make it much harder. It takes time for your application to wind its way through the bureaucratic process and the unfortunate reality is that many applicants get denied at first. In many states, the rate of initial denial of an SSD claim can be over 60%. The appeals process is lengthy as well. If you don't apply until you absolutely can't work anymore, the financial consequences can be devastating.

How to Get Started
It's normal to feel overwhelmed by the Social Security application process, but you don't have to figure it all out yourself. There's a wonderful site called Disability Secrets where you can find all the information you need to better understand the process and to make the whole thing easier. Among other things, they suggest a few things you can do yourself to help your claim:

Start the application process as soon as possible. When your RA starts to affect your job in a way that can't be accommodated with equipment, flexible hours, etc., start the process. Many people don't know that you can work while applying and even after being approved - there's a limit to how much money you can make, but it's commonly acknowledged that the amount given by Social Security is not sufficient, so you are not expected to have no income at all.

Get help. Applying for Social Security means entering a bureaucratic jungle where it can feel as if you have to jump through more hoops than there are in a flea circus. Confusion about what information is required can delay your application and inaccurate or incomplete claims may be more likely to be denied. Get representation by a qualified advocate or disability lawyer who knows the system, knows which forms need to be filled out, etc. Be careful when hiring your representative -- you want to be sure your advocate is reputable and there are questions you can ask to help you find a good one (e.g., a reputable disability lawyer will not require payment until your claim has been approved).

See your doctor regularly. Demonstrating that you are committed to managing your condition and doing what you can to ensure that you remain as stable as possible by seeking regular treatment can be an important factor in an SSD claim being approved.

Keep copies of everything. I often joke that to have a chronic illness or disability, you need an advanced degree in case management, but it's really only half a joke. Keep copies of everything - not only will it help you and your advocate in preparing and pursuing your claim and/or a possible appeal, but paperwork has been known to disappear in the bureaucratic jungle. If you have copies of everything, you will be able to minimize delay.

You can get more information on Social Security including fact sheets and downloadable forms on the Social Security website. However, that's only the beginning of the information you need. For tips on how to navigate the bureaucracy, important information about Social Security, tips on finding a qualified advocate or representative and much, much more, check out Disability Secrets. The site also has a blog with entries discussing specific questions - you can read through the archives or if you're looking for anything in particular, there's a search function in the upper left corner.

You can read more of Lene's writing on The Seated View.