Today is the First Step

My name is Tiffany Golden, and 20 years ago I was told that I had a disease called Systemic Lupus Erythematosus, or Lupus SLE. I was just beginning my teenage years and didn't understand why I was so tired ALL the time, and why I couldn't walk well, or why my joints would swell to the point of locking up. A lot for a teenager.

Over those 20 years, it had went in and out of remission; I even had a period of seven years with no known symptoms. After I had turned 30, it seemed to be flaring more often and longer to recuperate (in addition to being a much more stressful time in my life). These last six years have taken a toll on both my self-image and self-esteem; having a pronounced limp has been a large part of that, just like having an unsupportive partner contributed as well.

But, despite what got me here, I do know that I am in control of how I feel about myself and how I treat myself. I have learned to have much more compassion towards myself and treat myself kinder. However, when it comes to other people, I somehow haven't developed the greatest boundaries for myself. For instance, I was having a tough day last Saturday and went to Starbucks to write. I ran into a woman from the "health" community, and she asked what was going on with me. I told her, even though I didn't really want to. She asked had I tried meditation, obviously being a bit condescending--especially when she said, "Well, it really takes consistency." And while she may have thought she was being helpful...she wasn't. At all. I have tried LOTS of things. Cleanses, fasts, lifestyle changes, exercise, positive outlook, medication, various forms of therapy, raw foods...a lot of things--things that have been extremely helpful. I felt like she talked to me like it never occurred to me to take care of myself. I felt shamed because she had her functioning joints and it seemed that she was looking down on me.

Whether or not it's true, only I can change how I feel about the Lupus. Today I saw a Walk for Lupus Cure that's going to be in San Francisco next month. I want to be there, walking. For me. If I can change the way I look at Lupus, and approach it, I can build my own confidence and be a better advocate for myself.

This blog is about that journey.