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The Loneliness of Lupus

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This content is created or selected by the Healthgrades editorial team and is funded by an advertising sponsor. The content is subject to the Healthgrades medical review process for accuracy, balance and objectivity. The content is not edited or otherwise influenced by the advertisers appearing on this page except with the possible suggestion of the broad topic area. For more information, read the HealthGrades advertising policy.

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The 6 'Ps' of Managing Lupus

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The side effects might be alarming, but Dr. Wilson emphasizes the risks avoiding treatment.
the-loneliness-of-lupus

Meredith Rich Emery was diagnosed with lupus in college. Now 25, she is accepting her diagnosis.

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.

Meredith talks about how life has changed with Lupus.

2016 Healthgrades Operating Company, Inc. All rights reserved. May not be reproduced or reprinted without permission from Healthgrades Operating Company, Inc. Use of this information is governed by the Healthgrades User Agreement.

Telling my story for HealthGrades was the first time I've actually branched out and spoken about my disease openly. Reflecting on the interview, I felt almost ... enlightened. It felt good to talk about it, especially in front of people I didn't know. Going through the interview process helped me realize how beneficial it is to share my story. It's helped me open up and live with the fact that lupus is a part of who I am. Sharing my story with you has helped me accept that lupus is a huge part of my life that I can't neglect or hide underneath.

My fingers still get swollen, especially in the cold. And within the past year, I've developed Raynaud's syndrome, a disorder that causes discoloration of fingers and toes and sometimes brittle nails. Whenever I'm stressed or anxious, my hands are the first things to turn white and lose feeling. Only five to 10 percent of the population has Raynaud's, but it's found in 50 percent of lupus patients. I tend to lose circulation in my feet and my fingertips as a result of the Raynaud's, but I feel lucky: some people lose circulation in their face. In the winter, I make sure to have leather gloves at my side, and I have a small heater at my work desk. But, like my swollen hands, it's all a part of this disease, and I've learned to manage it. I hope that by sharing my story and explaining how I live with my illness, I'll help someone else to believe they can manage and overcome their lupus, too.

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© 2016 Healthgrades Operating Company, Inc. All rights reserved. May not be reproduced or reprinted without permission from Healthgrades Operating Company, Inc. Use of this information is governed by the Healthgrades User Agreement.

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