I got a phone call yesterday from the wife of a long-time friend who has lupus. Besides affecting her joints, it had attacked her gastrointestinal system, was very painful and she had spent most of the past ten years in bed. I had written about her in past blogs. She had ruled her house from her bed, overused pain medications, loved the attention of being ill and expected everyone to put her first. For their three children, her illness had made for miserable childhoods. Suddenly, one is off to college and the other two are quickly following behind him.
It was our most coherent conversation ever. She realized that life was changing and everyone was moving forward with their lives. Suddenly, she had lost control. She now wanted her life back and the only way to do that was to remove most of her pain medications from her daily routine. She knew she would still have pain but she wanted to live without the fuzzy brain and from her bed anymore. She now takes just a minimal dose and is out of bed doing things during the day.
But, it may be too late to rescue the relationships with her husband and children. Only time will tell. Her handling of her disease is what I call "becoming the disease." It became her identity. It is what she talked about and complained about and only thought about. Everything, and I mean everything, came after it.
It is a sad way to live. Powerful and controlling but, in the end, sad. At the ILD Support Group last week, I spoke to the group about having respect for the disease and giving it the attention it needs but to not let it run our lives. Fold it in. Adjust for it. But, don't let the disease drive it. Clearly, she is an example of how not to live with a bad diagnosis.
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