LupusVoice Voice your story.
 
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In approximately 
2000 words or less, write about how you feel lupus has TESTED you, sharing the lessons you have learned as a result.
 
I was once very uneasy about speaking 
to others about my experiences. For 
the first couple of years after my diagnosis 
I did not know anyone under age 40 with the same 
condition. I was terrified and confused and tried 
desperately to find books with firsthand accounts. But most books 
I could find were either about medical aspects of the disease, or suggestions for steps for coping by people that were much older than myself. They were typically already married with children when they were diagnosed, so their life experiences did not resemble mine in any way. I simply could not relate. Friends suggested that I consider a support group. But again, most groups were attended by older people. Besides that, a group setting just never felt right for me. I wanted to read in the privacy of my own home, in my own time. It was at that point that I realized there was a distinct need for a resource like this for young people like myself dealing with the disease; young adults who were struggling to find themselves, dealing with dating and establishing a career, all while battling a chronic illness. There was no ten step guide for that. My intent now is to write a book comprised of the stories from young people like you and me. I do not intend to create any ten step guide because I don’t think it’s possible or even helpful for that matter. Since each individual’s experiences are so different I can’t imagine how someone could attempt to tell you what steps you need to take to cope. Instead, what has helped me is learning about the stories of people my age living with this disease. Although their experiences inevitably differ from my own, in each story I see some small piece of myself, and I am comforted by the fact that, despite their fear or anger or sheer exasperation, these individuals continue to fight every day. Often facing their worst fears, they are able to muster real, raw, personal strength to keep going. I would always rather seek this kind of wisdom than research by well-meaning scientists about how one with this disease would be expected to feel and cope.