About Lupus

Lupus Coping Corner

Men with Lupus

Jessica Rowshandel, M.S.W.
Amy Caron
Project Director
Lupus Research Institute

In honor of Father’s Day, I’d like to recognize another set of men particularly important to us in the lupus community: the 10% of people with lupus who are men.

Lupus is often referred to as a “women’s health issue” because 9 out of 10 people with lupus are women; however, men get lupus, too. I understand that being a man with lupus brings along special challenges that women do not face:

Trouble Getting a Diagnosis
Diagnosing lupus is not easy for anyone. But unfortunately, I have received far too many phone calls from distraught and self-doubting men who have many lupus symptoms yet have been told that they could not possibly have lupus because it’s a woman’s disease. This could not be farther from the truth. Men, if you still think you have lupus despite being told you don’t, please see another doctor! If you need help finding a rheumatologist with an expertise in lupus, please call me at 212-685-4118 or email jrowshandel@lupusny.org.

Stigma of Having a Women’s Disease
As with breast cancer, it can be embarrassing for a man to admit to having what is thought of as a “woman’s disease.” Because hormones are thought to play a role in the development of lupus, men may wonder if this makes them biologically less manly (The answer is No). Others who identify with being physically strong or family providers can have a hard time coping with physical weakness, fatigue and pain, particularly if it affects their ability to work.

Lack of Social Support
For anyone with lupus, getting emotional support can be difficult. Friends and family may not understand what having lupus really means. Men with lupus can have an even tougher time finding support, especially since support groups are run and attended by mostly women. Yet connecting to other men with lupus is especially important. Because we are concerned about this unmet need, we are embarking on a long-term project of developing men’s groups, run by men—please email me at jrowshandel@lupusny.org if you would be interested in leading or joining such a group.

If you are or know a man with lupus, have you found these challenges to be true? Are there others that I have not mentioned? We welcome your comments on our Facebook page at https://www.facebook.com/lupusny.

Visit our website for other simple suggestions, print brochures, catch up on our past webinars to learn more about lupus and share the information on your social media pages.

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Lupus Coping Corner

Disclaimer: The information provided by the S.L.E Lupus Foundation is for educational purposes only and should not be used for diagnosing or treating a medical or mental illness, nor be a substitute for professional care. Consult your healthcare provider if you have or suspect you may have a medical or mental health problem.

Amy Caron, MPH is a lupus patient and Project Director of the Lupus Research Institute provider education initiative.  She is not a physician or counselor.  The suggestions shared in this column are strictly opinions from the perspective of a lay person with lupus. Lupus is a very individualized illness; consult a healthcare professional before making any decisions about your care.

The S.L.E. Lupus Foundation does not provide any direct medical or psychological services nor recommend or endorse any particular treatment or therapy. The S.L.E. Lupus Foundation employees, consultants, and agents shall not be liable for any claims or damages, and expressly disclaim all liability of any nature for any action or non-action taken as a result of the information generated by the S.L.E. Lupus Foundation programs and its website, as well as the S.L.E. Lupus Foundation Facebook and Twitter pages.