My name is Gwen Alexander and I’ve been diagnosed with lupus since 2006. I’m pretty confident I’ve been living with it most of my life but just not knowing. I’m a divorced mother of a 16-year-old dancer, wannabe actress/model/chef/beautician. I’ve been dating the same man for about 10 years and for now I’m working full time and I am currently the Ambassador for the Lupus Foundation of Minnesota (LFM). I’ve spent most of this year raising awareness and monies for the foundation. For the next few weeks, I will be blogging about my life with lupus.
For me, the worst/best part about lupus is that I don’t look sick. I don’t like to generalize, but they say this is a mostly “invisible illness.” When I got my diagnosis of lupus, I was working part time by choice because I was overwhelmed by my illness and I was concerned about my attendance and ability to work 40 hours a week. I had a coworker who would everyday tell me how “lucky” I was to be able to leave early everyday and how nice it must be to go home and just lie down. He and some of my other coworkers just thought I was working for fun or that I had someone at home that paid all of my expenses. It never really occurred to me to tell them the details of my lupus because it just felt like too much talking and too hard to explain, especially since I looked fine to them.
The reality of it was that I was exhausted all the time, I felt like I was walking on rocks all the time, my joints ached … it goes on and on. I was often frustrated that no one really seemed to understand how I felt except for my best friend who suffers with rheumatoid arthritis. I wished everyone knew how I was feeling. But how could they know if I didn’t tell them? Talking about my illness doesn’t make me weak or a whiner. All I’m doing is making people aware that this is my world and this is what my personal struggle is on a daily basis. The more I spoke about it, the more people were empathetic; the more I realized that they knew people who also struggle with like or similar illnesses but because those people really didn’t speak on it they didn’t know what to make of it. I chose to talk about it. Those coworkers have now volunteered time and monies to LFM because they understand better.
I chose to have purple hair to remind me to talk about it with others and to make it easier for others to talk to me about lupus. The more awareness we have, the faster we can get to a cure. No, I don’t usually look sick, but I am and I do talk about it.
I have lupus. I have purple hair and and I’m gonna talk about it.
More later. Keep talking about it …
I have got a disease no one can see. The way I feel it will be the end of me. “You do not look ill.” That is what they say, but I would like them to be me just for one day.