Five men share their stories about living with lupus, and finding support in groups specifically for men.
Men Share their Stories
Introduction by Robert S. Katz, M.D.
As a practicing rheumatologist, I have found that most people with lupus learn, over time, how to cope with the disease. Family support helps a tremendous amount. A good doctor-patient relationship is also important. Friends can be helpful, as well. There is often a period of sadness and grief when a person is sick, or immediately after an illness or diagnosis, but people with lupus gradually come to grips with that.
Research suggests 4 percent to 22 percent of those with lupus are male. Men develop the same typical clinical manifestations of lupus as women, yet certain key symptoms may be different. Kidney and skin involvement, for example, may be more common among men with lupus. Active lupus can cause many symptoms, which will make it much harder to cope. So it is important that lupus be controlled as well as it can be.
There are other tips that may be helpful in your journey with lupus. Focus on the future and what you need to do to get better. Don’t look back at what might have caused your illness or ask, “Why me?” Try to incorporate some level of exercise into your daily schedule.
Educate yourself about lupus and get involved in your own health care. When it comes to reading about lupus in the library or on the Internet, be sure you are accessing reliable content. Read up-to-date books and visit trustworthy Web sites, such as the Lupus Foundation of America (lupus.org) or the National Institutes of Health (nih.gov). Be cautious when reading blogs that relate personal stories, but not necessarily accurate medical information.
When coping with pain, visual imagery can be helpful; think of yourself watching the ocean or walking over a new layer of snow and try to relax your body. Distraction can help. Read, watch TV or a movie, pursue a hobby—anything that keeps your mind off your symptoms. Look for treatments, not cures.
If your symptoms worsen, talk to or visit your health care provider before changing your diet, medications, or over-the-counter supplements. And when you have an appointment, write down what you want to discuss with your health care provider and prioritize it before you go so the most important issues are covered. Consider bringing someone along who can listen so that both of you have a good chance of understanding treatment suggestions. Don’t hesitate to ask questions if you don’t understand the advice. And don’t be afraid to call your physician if you have concerns, new symptoms, or any other problem.
Try to talk about your illness; this is much better than internalizing your angst and worries. A psychologist or other professional counselor can help you talk about the effect the illness has on your career, family, and hopes and dreams. Above all, realize you will get through this. With the support of your family and health professionals you are comfortable with, and your own commitment to the treatments prescribed, you can regain your life.
Robert S. Katz, M.D., is with Rheumatology Associates in Chicago and is a longtime member of the Lupus Now Advisory Board.
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 with Lupus Now (LN)
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.
LN: 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.
LN: 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.
LN: 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.
LN: 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.
LN: 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.
Interviews were compiled and edited by Katherine Johnson, an intern with the LFA Education & Research Department, who is currently earning her undergraduate degree in community health at the University of Maryland.