Six men talk about their lives with lupus
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, was diagnosed with lupus at age 20. 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. David worked for AT&T for almost 20 years, but went on disability leave for six months following an overwhelming bout of blood clots. When he returned in October 2009, he was told that, due to corporate downsizing, he was being let go.
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. After a doctor prescribed “light duty” due to the illness, the company laid him off. 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 admitted to a hospital and finally diagnosed with lupus.
Q/A: Q&A with Lupus Now (LN)
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 have gotten 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.
Has your lupus or the medications you take interfered with your participation in sports? If so, what are your strategies for “getting back in the game”?
Keith: I was always into sports, always fit and healthy. I also played professional soccer and was dedicated to being in shape. When I got out of the hospital I tried to stay active, [working out] in the gym, playing soccer, and lifting weights along with cardiovascular activities. I feel like the medications have helped with my journey with lupus. The disease is tough; I still use the gym, but do not play sports like I used to. My biggest dislike for having the disease is not being able to enjoy the sun, but I try to go out every day with my sunblock on and my umbrella for shade.
Steven: I like to consider sports a hobby; mine are working on cars and building things. I just take the full-sized version and scale it down to building models. It keeps my mind busy, and I feel as though I am creating something. Just scale it to what you can do.
How do you handle the physical demands of raising children?
David: Letting my children or family and friends read about lupus makes it easier, because then they can see the symptoms and relate to what I am going through.
Charles: Since I do not work, I can use the energy that I do have to spend time with my children. I won’t be able to play football with them, but there are many things I can do with them. We take walks; I try to ride bikes with them or push them on a shady swing set. When I am not feeling well or am low on energy, we watch movies or read books together.
What have you learned about yourself since you’ve been diagnosed and dealt with this often-unpredictable disease?
David: I’ve learned to let go and enjoy the good times and understand that the flares are temporary. The quality time I spend with family is more important to me now. Understanding that I am not alone makes it easier to cope.
Keith: I have grown mentally, developed patience, and become heavily dependent on family support. I honestly try to have a positive look at life, which helps me to get by on a daily basis. Seeing my doctors and hearing good news is always a plus.
Harvey: I have learned I can handle far greater pain than I had ever thought possible before being diagnosed. It is much easier to take one day at a time than I had ever thought it would be.
Steven: That I can adapt and overcome by not giving up and by taking one day at a time. Most important, I listen to my body and don’t try to be Superman!
Charles: I have learned I can laugh at anything. I have learned I am stronger than I thought. I have learned that I can take a lot more pain than I ever knew. I have learned that frustration is now a part of my life. I have learned to enjoy every minute and not to sweat the small stuff.
compiled and edited these interviews. She is an intern with the LFA Education & Research Department, currently earning her undergraduate degree in community health at the University of Maryland.