Men and women experience multiple sclerosis in different ways. While MS is not a “female disease,” more than three out of four people with MS are women. Not surprisingly, few studies have been published about the management of MS in men or the experiences of men with MS. Recently I attended an entire session at the 30th Annual Consortium of MS Centers Conference held at National Harbor, Maryland, June 1-4, 2016, dedicated to men and MS.
Men tend to have a more progressive onset of disease, more rapid accumulation of disability, and need help with mobility more quickly than women do. Men with MS typically have fewer relapses, but the relapses they do have are more likely to affect motor function and less likely to be sensory in nature. However, men and women tend to reach disability milestones at overall similar ages. How MS affects the brain differs in men versus women. For example, men experience a greater ratio of T2 Gd-enhancing lesions that evolve into T1 hypointense lesions (i.e., “black holes”).
Very few trials in MS treatment report differences in treatment effect between men and women, and the few that do have reported negative results (i.e., trials with beta-interferon or glatiramer acetate). Researchers need to begin to design MS trials in a way that will allow for sex-specific results in order to develop better treatment options for men with MS.
Good news for men who wish to become fathers: MS in men has not been associated with spontaneous abortion, low birth weight, or premature birth. When men with MS want to become fathers, questions arise regarding use of disease-modifying therapies. No adverse consequences for the unborn child have been reported with a father’s use of beta-interferon or glatiramer acetate. Doctors recommend that men on teriflunomide undergo an accelerated elimination washout protocol or wait two years before attempting pregnancy. Men who plan to start treatment with mitoxantrone or cyclophosphamide should consider freezing healthy sperm ahead of time, because these treatments can damage sperm.
Relative to the general population, men with MS have higher prevalence of hypertension, diabetes, epilepsy, and psychiatric disorders than women with MS at the time of disease onset. Men with MS are at greater risk for depression and suicide than their healthy counterparts. However, their lower quality of life is impacted more by mobility impairments and sexual dysfunction than psychological concerns.
Depression is twice as common in women without MS while alcohol dependency is 2-3 times more common in men. Studies in MS indicate no significant gender difference in depression rates among women or men with the disease. Psychiatric comorbidities (three or more diagnoses of depression, anxiety, pseudobulbar affect, etc.) are more common in women, who are also more likely to be prescribed psychotropic medication. The close association between alcohol dependency and anxiety or depression, combined with gender stereotyping, may lead to these conditions being overlooked in men with MS.
Men living with multiple sclerosis are very much like men without MS. Cultural stereotypes prove to be all too true, said Rosalind Kalb, Ph.D., vice president of the Professional Resource Center at the National Multiple Sclerosis Society, at the CMSC conference. Men with MS generally don’t talk about emotions and problems and don’t ask for directions or help. They see themselves as doers, fixers, managers, and providers, and believe they should manage challenges on their own.
Men use the healthcare system less frequently than women and approach MS analytically rather than emotionally. As natural risk-takers, men with MS engage in fewer preventive health behaviors. They are slower to report symptoms or get evaluated for MS, and often slower to start treatment. They are more likely to opt for more aggressive treatments, but tend to be less adherent to a treatment regimen. Men have a greater tolerance for risk and aren’t comfortable expressing feelings. They tend to have fewer social/emotional supports and outlets and are more likely to rely more on alcohol/drugs to manage feelings.
The National MS Society receives 175,000 calls/emails per year in proportional numbers of men and women. Men who call the Society are more comfortable asking for information, referrals, research data, and less comfortable asking for help or support. Men are more likely to wait until they are in crisis to seek help for issues related to health, disability, employment, adaptive equipment, housing, utilities, food, access to care, or financial assistance. Even in crisis, more probing is often required to uncover the need, especially those related to abuse, neglect, homelessness, depression, or suicidal ideation/intent.
Kalb says that men are more interested in wellness than in symptoms, diagnosis or medications: they want to fix MS themselves. Among wellness topics, men with MS are most interested in diet and vitamins as management strategies. Healthcare professionals should encourage self-care and wellness strategies to enhance feelings of autonomy and independence in men with MS and to encourage them to think proactively about how to adapt their personal and occupational roles in ways that align with their self-image.
See More Helpful Articles:
Men and MS: A Multidisciplinary Approach. Consortium of MS Centers, June 1-4, 2016, National Harbor, MD.
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.