Thanks Phyllis.... I'm looking forward to my book arriving soon.
So....I guess I'll take a stab at the question Hatlady has circulated.....
In the beginning, when I was first diagnosed with Lupus, I was 18 and wanted only to 'fit in' and be able to do all the things everyone else did. I didn't want anyone to know I was sick..because that meant explaining...and Lupus was pretty tough to explain 27 years ago...still is today, for that matter. I also didn't want to be 'outed', because I discovered that once people knew, they treated me differently. First, people close to me tried to convince me that I wasn't being treated differently...that it was all in my head. But my perception was that whenever I told anyone, I began to feel like they felt sorry for me, that they stopped calling me to do things, that they didn't come around anymore because they didn't want to hear any bad news. I also got tired of the ignorant people that, once you told them, they asked stupid questions or had to be told every time you saw them, that, "yes, I still have Lupus. No, there's not a cure. No, this rash is not contagious...." I came to hate those conversations.
So, for a very long time, I became real quiet about my disease. Because I was in remission and had no outward signs, it was easy to 'not' tell anyone. After awhile, I began to pick and choose who I would tell. I would wait when I first met somebody new, to get to know them and kind of get a feel for their character. If they passed my test and I felt they were a kind, compassionate, understanding person, then I would tell them my story if it happened to come up in conversation, or they asked me a question directly related to my health. I have found that this method still works for me.
One thing I did discover during my years of working full time (I'm on SS Disability now) was that I would get a job and go in and prove myself first...I would make sure my employer could find no fault with my work, do an excellent job and sometimes make myself as valuable as 2 employees, to assure my value at the company. Then, if I felt like my boss was going to be understanding, I would choose to share my health information. I also discovered that sometimes when you tell people at work, they change their attitude toward you for the worse...and sometimes for the better. One day, I discovered that in sharing I had arthritis, I accidentally met another woman with Lupus as well. I was sitting at my desk after typing a bunch of forms and had joint pains in my fingers and wrists (it was a cold, grey winter day) and I was absentmindedly rubbing my joints. She walked by my desk and asked if my hands were okay. When I told her I had arthritis, she said she also had it and asked me what caused it. I told her I had Lupus....imagine my surprise when she said she had Lupus too. She asked me to go on break with her, and we became very good friends for the next 3 years, until she moved to San Diego and we lost touch. She was the nicest thing that ever happened to me during my working years. She was the neatest lady and I remember she tried to stay active by doing Karate. And she had her blackbelt. Pretty impressive!
So I guess my answer is that sometimes being 'outed' causes much more misery and stress than it's worth....and sometimes it can bring you a kind, understanding new friend.
And sometimes being 'outed' means a chance to educate someone that asks a simple question like..."Why do you have so many stretch marks on your arms?....or "What's Lupus, my cousin has it and I don't really know that much about it?" Whenever I'm having a medical test done, or an x-ray, or something, I always seem to get a technician that asks something like..."So, why have you had your hips replaced, you're so young?" So now I make sure to 'educate' them the best I can about Lupus and answer all their questions, as long as they're asked in a polite way. And if they happen to know someone who has Lupus, I always tell them to make an extra effort to do something kind for that person, or give them a call and see if there's anything they can do for them. I explain that Lupus is a very frustrating, lonely disease that attacks really great people that don't deserve it.
Now that I have written a chapter in a book....I guess I better thank anyone that actually reads this thru to the end....
Just call me Chatty.... Right about now, you guys are probably thinkin'...."why did we let HER join this book discussion....?"