The Loneliness of Lupus
About a year ago, my now-husband, Shaun, knelt down and asked me to marry him. I held out my hand excitedly so he could slide the gorgeous ring onto my finger ... but he couldn't. It was cold outside and my hands were swollen as a result of my lupus.
I went to work and told everyone the news of our engagement but didn't count on all the women asking to see the ring. They couldn't see the ring, because I wasn't wearing it. My fingers were too swollen. One co-worker kept pushing it and asking why my fingers were like that. I finally gave in and told her I had lupus. She grew quiet and then just looked at me, as if she was thinking, "poor child."
The only people who know of my illness are my family and about five of my friends. I don't like to share my lupus with people because of the reaction I receive when I do; everyone looks at me with concern and pity. I want people to perceive me as independent and strong, and when people learn that I have lupus, they put me in a different category. They see my lupus as a weakness. I'm comfortable with my disease; it's a part of my life and all I can do is manage it the best I can. But I'm not comfortable with people thinking I should be pitied or treated differently. I'm every bit as capable as anyone else.
Opening Up About Lupus
In general, I'm a self-reliant person, so when any ailment or stress comes along in my life, I keep it to myself and my immediate family. Even in my marriage, I tend to take on the full responsibility of my illness, and I don't expect my husband to educate himself on my lupus or change his lifestyle too much. Since my swollen fingers marred the proposal, I've tried to prevent my illness from affecting our relationship. It's hard for me to ask for help; I've been dealing with lupus on my own for a long time and I knew how to manage it before we started dating, so I feel like I shouldn't involve him. I probably should try to engage him more about it, but part of me is afraid he'd start thinking, "Oh, there she goes again with the pain," or, "Her shoulders are hurting again?" I don't think he'd resent me for my illness, but I don't like being at all vulnerable. I know, however, that I need to do a better job of communicating the cons of having lupus with Shaun, especially before we start the process of having a child.
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