June 15, 2022
It took years for Dan Baruah aka ‘Dan the Man’ to come to terms with having lupus. He graciously shared his story with us in recognition of Men’s Health Week and to help others living with lupus.
When Dan was first diagnosed with lupus at age 52, he didn’t tell anyone, not even his family. “How can I, a man, have a ‘woman’s disease?’” he thought. In denial, he took on an even more challenging job, worked longer hours than ever before — and in return, “Lupus came back at me like a beast!” Despite developing shingles and his doctor’s orders to stay home, Dan was determined to fight – going to work every day until he no longer could. He resigned from his position to recuperate for months.
That’s when he realized he needed help. Comparing his lupus journey to going through the many stages of grief, Dan describes having now gone through denial and anger to enter the phase of acceptance. He tried to visit all the lupus meetings and events in New York City and got his nickname ‘Dan the Man’ as the only man in most lupus support groups. But Dan is determined to enlist others to join this lupus warrior community and has lots of wisdom to share.
Thinking of lupus as a biopsychosocial disease, Dan advises taking care of the physical, emotional, and social sides of life:
- Take care of your physical health – Look for a good provider with a strong reputation, compassion, and curiosity about the disease. Does he/she listen to you and want to collaborate on your treatment with you, your caregivers, and other specialists involved in your care? If your provider is not meeting your needs, find one who does.
- Take care of your mental health– Don’t isolate. Share with others what works or doesn’t work. Dan advises working with your healthcare team by becoming an ‘e-patient’ who is empowered, engaged, equipped, and enabled. He suggests trying his daily M&Ms resiliency practice – Meditate (be mindful), Meet (connect with peers with lupus and attend support groups), Move (exercise or take a walk), Make (Create), and Marvel (wonder at the miracles of life).
- Take care of your social well-being – Find something meaningful in your life. For Dan, it’s raising awareness and funds for lupus research and encouraging others to get involved in lupus clinical studies whether it’s taking part in a trial or providing the patient perspective in study design. “Give back to the lupus community – don’t stay by yourself in your lupus man cave!”
Finding purpose is Dan’s most powerful weapon in his own lupus care; he follows his own advice and is highly active in the lupus community. For instance, at the recommendation of the Lupus Research Alliance (LRA), Dan served as a Consumer Reviewer for the Lupus Research Program, a research grant program managed by the Department of Defense that the LRA advocated Congress to create and maintain with increased yearly budget allocations. Since 2017, Dan has been bringing his unique patient perspectives to the clinical trial arena as a patient advisory board member. He interacts with men with lupus on the social media and is trying to innovate ways to create in-person events in New York City that offer an opportunity for support in a way that men might better relate to.
“I now call myself the “Lupus Whisperer Dan. I take care of my lupus, but the leash is in my hand. By taking control, helping other people with lupus, partnering with the LRA, I am in the driver’s seat of my lupus journey.” He invites the lupus community to contact him at firstname.lastname@example.org.