How Men With Lupus Face Specific Challenges

Even though most people with lupus are women, men develop lupus, too. About 10% of people with lupus are men. The fact is that anyone can develop lupus. Since lupus is often referred to as a women's disease, men with lupus face unique challenges that lead to feelings of exclusion from the lupus community. This can make it harder to cope with the disease. It's helpful to talk about these challenges as a way to raise awareness, as well as validating the experiences of men with lupus.

Men Might Have Trouble Getting a Lupus Diagnosis

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Unfortunately for many, it can take years to get a lupus diagnosis. In some cases, it can take longer for men because lupus is framed as a women's disease.

There are men with lupus who have been told by medical professionals that it's impossible that they have lupus because men do not develop lupus. (Yes, this happens, though hopefully not often!)

No matter what anyone says, men do develop lupus. That is a fact.

And if you encounter a doctor who tells you it is impossible for you to have lupus because you are a man, if possible find a new doctor.

If you suspect you have lupus, it's best to see a rheumatologist who has experience with the disease. Sometimes that's not possible due to barriers like lack of health insurance, which could mean you see a general practitioner at a community clinic. If the only doctor available to you is a general practitioner bring educational material with you to your next appointment.

The Lupus Initiative has educational material geared toward helping medical professionals learn more about lupus. Share their resources with your doctor.

If you need help finding a doctor, contact your local lupus organization. They should be able to refer you to a reputable rheumatologist.

Lupus Is Not a Female Only Disease

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Even though some people incorrectly label lupus as a women's disease because about 90% of people with lupus are women, it is not a women's disease. It would be more accurate to call cervical cancer a women's disease since it can only be diagnosed in people assigned female at birth.

When men are finally diagnosed with lupus, it can feel confusing to have an illness that is often called a women's disease, just like it might for a man who is diagnosed with breast cancer. (Men develop breast cancer, too.)

Being a man with a "women's disease" comes with a stigma. It can challenge their manhood. Are they less of a man because they have a disease that mostly women develop? They might wonder this, and it's natural to do so. But the answer is, Of course not. They were men before being diagnosed and they are men after being diagnosed. Anyone can develop lupus.

Some men wonder if there is something wrong with them hormonally and if that makes them less of a man. Are they producing estrogen at the same rates that women do since there is a link between women, estrogen, and lupus? No. They are not. 

Furthermore, if a man's gender identity is linked with traditional gender roles, and he can no longer work due to physical limitations, this could be particularly challenging -- not only financially, but also emotionally. Feeling like he can't provide for his family or himself, or that he is physically weak can be hard for a man who sees his physical strength and being a provider as part of his manhood, and it could impact his sense of self-worth.

Just as worrisome, men can feel excluded from a community that is geared toward women. If everything associated with lupus is tied to womanhood, then men might not feel that they have a place within the lupus community. This might prevent them from obtaining the support they need to cope with living with the disease.

Finding Support Is Important

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It might seem contradictory to advise that men who feel alienated from the lupus community should seek support from the very community they feel excluded from, but support is key, especially for people who feel isolated.

A good support group will welcome anyone who needs the support. Factors like gender, race, ethnicity, or class should never be reasons to exclude anyone.

Many experiences with lupus are universal, so there will be a lot to talk about no matter what.

Fatigue and body pain are, for example, experienced by almost everyone with lupus. Most people with lupus can understand the heartache of unsupportive friends and family. And some might even share the joys of supportive loved ones.

Being unable to work can sometimes cause frightening financial challenges for people of any gender.

Support groups are not the only way to get support for lupus. If you prefer one-to-one support, you can see a psychotherapist. Finding a therapist with experience with chronic illness is recommended.

Let People Know What It's Like Being a Man With Lupus

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Good support groups will also help men feel comfortable sharing what it's like to be a man with lupus.

It's also helpful for others to hear since not everyone knows that men might feel excluded from the lupus community because of their gender.

The only way someone would know this would be if they are a man and have the lived experience, or awareness spread because a man decided to share his experience. Either way, the primary source of this information would be a man with lupus.

It also helps sensitize others to these types of struggles, improving their understanding and empathy for what it might be like for a man to live with lupus.

Express Yourself About Your Personal Experience With Lupus

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If you feel alienated from the lupus community it could be difficult for you to open up about these experiences in a support group.

Other personal and/or cultural reasons could contribute to a discomfort in expressing your emotions, in general.

If either is true for you, try to remember that expressing yourself is part of managing and coping with lupus.

When you're in a support group, you will see that people express themselves in a variety of ways. Some people express their feelings -- of sadness, anger, frustration -- to get relief from the intensity of those feelings.

Some people cope by sharing funny stories related to lupus.

Others share updates on what's been going on with their lives, especially regarding lupus.

Expressing yourself doesn't have to be sentimental or full of tears (although it can be). But it's common to feel a sense of both relief and connection to others when you express something about your experience. It doesn't have to be very personal, either, if you're not comfortable with that.

Regardless of your sex or gender, coping with lupus can be hard. There's a lot of grief and anxiety associated with lupus -- over pieces of your life that have been lost or interrupted, or a fear of what's to come.

You are human and will have a wide range of emotions in response to living with lupus. And those emotions are valid.

Also, in hearing your experiences other people, including other men, will likely identify with you and, in turn, feel less isolated.

Meet Other Men With Lupus

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Regularly connecting with even one other man with lupus can help someone feel less isolated and more understood about issues that are more specific to being a man with lupus.

It's also understandable if you feel uncomfortable talking about things specific to male biology, like erectile dysfunction as a medication side effect, in a group setting.

To find other men with lupus, you can try support groups -- face-to-face or online. They are good places for men with lupus to meet other men with lupus, even if there are not many that attend.

In general, it's common for people to befriend people through support groups and spend time together outside of the group.

Lupus educational events are also good places for meeting other men with lupus as well as empowering yourself with up-to-date information about the disease.

Getting involved in the lupus community in any way can decrease isolation by increasing the chances of connecting with others.

Include Men in the Lupus Community

It's important to remember that men develop lupus, too. Their physical and emotional lives can be impacted by whether or not they are included in the lupus conversation and community. The good news is that in recent years there has been an increase in the discussion about lupus and men -- a step in a helpful direction.