Living with a Disease No One’s Heard Of
Living with a Disease No One’s Heard Of

June 24, 2021

For Men’s Health Month, we spoke to several men about their experience living with what is commonly thought of as a woman’s disease and one that too few people are familiar with. Many told us that they find people’s lack of knowledge about lupus extremely frustrating and are determined to educate others.

“My biggest experience in living with this disease has been how little people know about Lupus,” describes Timothy Johnson. “I find myself explaining over and over again what lupus is and how differently it effects the people who have it.”

Derek Bennett explains, “Most people I tell have no Idea what lupus is at first! I end up explaining what it is and how it works.”  He went on to advise: “You are always going to face people that have their own thoughts and feelings about you and what you are going through. Understand that they don’t know and comprehend what you have to deal with and the struggles you face. Some of those people will be helpful, others… not so much. Always remember they aren’t in your shoes. Forgive them for that, try to teach them and let them in. Sometimes it’s just better to help them see the bigger scope, both for their knowledge and understanding, as well as for you to deal with the struggles.”

Research has shown that men can have a tougher time than women dealing with lupus because they tend to have a less strong support network. The men we spoke to bear witness to this challenge and offer ideas for how to enlist comfort from others.

Derek Bennett advises speaking to people about what you’re going through. “As cheesy as it sounds, opening up to people can help you come to terms with the changes. Even if it doesn’t, just finding someone to release your thoughts and feelings with helps remove that stress (which isn’t good for people with autoimmune disorders) and renew that resolve to keep pressing forward. It is not a good thing to keep things bottled up, and you aren’t any less of a man for speaking out. You may be the one with the disease, but that doesn’t mean you have to be alone in fighting it.”

Martin K. Lewis strongly believes in sharing the experience with others for their sake as well as your own. “Find a way to share your story with people you love and your community. You’d be surprised who needs to hear it and how people feel once you let them in. We seldom know the struggles we are all going through, and I find that we can be quite surprised by the support we didn’t know we had. You won’t find that support if you struggle in silence though. I think it’s important to share your story. In doing so, you can write an even better one along the way.”

Together, ManyOne Can make a difference!
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