Featured Article: Summer 2010 Issue of Lupus Now
Six Men Share Their Stories
To gain some insight into coping strategies specifically for men, we posed questions to six men about their lives with lupus. We think you will find their responses not only helpful, but also inspiring to any man coping with this disease. These are our interviewees:
Steven Helms, 46, of Marshville, NC, was diagnosed with lupus in 2008. Steven’s doctor told him he could no longer work because of his constant fatigue; after 19 years of service to his company, Steven’s last day on the job was Jan. 21.
Vince Alario, 40, of Pittsburgh, PA, was diagnosed with lupus in 1990. He later developed lupus nephritis and has been on dialysis three days a week since January 2007.
Harvey Stuart Cahoon, 46, of Stony Point, NY, was diagnosed in 1995 with lupus involving his heart and lungs. He had to retire from his job as a police officer and is now receiving Social Security disability benefits.
David Small, 45, of Tampa, FL, was diagnosed with lupus in 2003. After working for AT&T for almost 20 years he was let go in October 2009, following six months on disability leave due to recurring blood clots.
Charles Zinn, 42, of Perrysburg, OH, was diagnosed with lupus in June 2000. Charles worked in quality control at a manufacturing company until symptoms of lupus made working difficult. Continued difficulties with his kidneys and persistent pain have kept Charles from returning to work.
Keith Samuel, 28, of Irvington, NJ, a former professional soccer player, was diagnosed with lupus in October 2009. Although fatigue, chest pain, and persistent fevers made it difficult to continue his job as a bus driver, it wasn’t until he developed skin and vascular complications that he was finally diagnosed with lupus.
How do you explain lupus to people who (wrongly) consider it a woman’s disease?
Keith: It is difficult as a man, because the disease is predominantly in women. I try to get as much information as I can from magazines and the Lupus Foundation of America to explain that this disease affects men—me included.
Harvey: I tell [people] that my grandfather had lupus and died from [disease] complications, and one of every 10 people diagnosed with lupus is male. I still get some pretty strange looks, because most people still don’t really know what lupus is.
Steven: Yes, more women have lupus than men. But it can strike anyone at any time. I am an example of that, and just knowing I am not alone keeps me going.
What is your biggest support system?
Vince: Friends have been supportive, but nothing compares to family.
David: Having family, friends, and faith. Also, having an attorney to help me navigate the Social Security process has been a tremendous help [in taking] a burden off my shoulders.
Charles: My wife has been the most supportive person to me. My church family has been invaluable: They shovel snow, cook meals, watch my children, support my wife, visit me in the hospital, and pray for me, as well as anything else I might ask for. When I first found out I had lupus, my wife—girlfriend at the time—took me [to a support group] every month, and it was so helpful. I met other men with lupus, and I was able to help them a little after I became more comfortable there.
Steven: My biggest supporters are my wife and family. The Lupus Foundation of America Piedmont Chapter has also been there for great support and information on this new life I lead.
What are your most successful strategies for coping with pain?
Steven: Listen to your body: When it needs to rest, do so, and the pain will be less severe. When you are able, exercise lightly to keep your strength up.
Charles: I got a hot tub, and this has proved to alleviate a great deal of pain. I have a bed that adjusts firmness, which I think is invaluable to lupus patients. Sleeping is one of the most important things to get in quality quantities.
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