Social Security Options

The last time I was able to work was April 1999. Since then, I’ve given birth, had multiple flares, been hospitalized, been off and on different medications in an attempt to find the right combination that will bring me some relief with the minimum complication of side effects, and generally just tried to keep my head above water.

It took a lot of realistic discussion, and some frank revelations for me to realize that I am not going to be able to work as a nurse again. I kept saying things like, “When I feel better, I’ll be able to do 12-hour shifts again." and “Maybe if I only work 2 or 3 days a week, I’ll be able to manage.” (This from a woman who has to get a cart in the grocery store when getting a loaf of bread, just so she has something to lean on, and frequently has to ask her 6-year old for assistance with his younger siblings!) After finally admitting that I wasn’t going to be getting better and “normal” was something that happens to other people, I took the plunge and decided to file for Social Security Disability Insurance (SSDI).

SSDI is a program that gives you an income based on the amount that you have paid into it. If you’ve worked in the US, part of your wages went into SSDI with each paycheck. This government program differs from Supplemental Security Income (SSI). SSI is paid on the basis of disability and financial need. The difference is important to an applicant whose spouse works. I’ve heard a lot of lupies tell me that they can’t get Social Security because their husband “makes too much money.” They probably just applied for the wrong program.

If you think you are disabled, there are several steps that you must go through to apply for SSDI or SSI. The first thing you should do is get copies of your medical records from your doctors. (Yes, all of them!) Get your office visits, lab results, x-rays, biopsy reports, hospital records, the works. These will become invaluable to you. You should file as soon as you become disabled, whether or not you have all your paperwork together.

• Call or visit your local Social Security Administration (SSA)

  The toll-free number for the SSA is 1-800-772-1213 (TTY: 1-800-325-0778). They can direct you to your local office, or if you’re unable to travel, will mail you the papers you need, and work with you on the phone. They have a website at http://www.ssa.gov where you can get all of the information that you need, including the forms. (The site can be a little confusing, so I recommend that you call for guidance. They’re more than happy to help explain everything to you, and everyone that I’ve dealt with has been extremely helpful.)

  The copyright of the article Social Security Options in Lupus is owned by Karyn Moran Holton. Permission to republish Social Security Options in print or online must be granted by the author in writing.

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