June 24, 2021
Men often hear messages from society that can discourage expressing symptoms or concerns about health issues. One man we interviewed, Derek Bennett, spoke particularly powerfully about how this cultural pressure affected his being able to cope with the effects of lupus on his life. And Priscilla Toral, LCSW from Hospital for Special Surgery shares excellent tips for managing as a male with lupus.
“I come from a family and culture where everyone expects the man to be hard-working, strong, and independent,” said Derek. “When things are wrong, we keep them private and figure out how to manage on our own…Since lupus isn’t a disease that you can look and see something is wrong, I dealt with a lot of criticism and being looked down upon, thanks to many of the symptoms and complications dealing with it. I’ve been called lazy at times when I really was so fatigued, I had to sleep between classes… When I’ve tried to express what was happening, I’ve been told to just suck it up and be a man. It took quite a while to shake that way of thinking. I met people who better understood what I was dealing with and helped me recognize the things that I endured and the strength and determination that I failed to recognize.”
The Hospital for Special Surgery (HSS), a highly active member of LRA’s LuCIN network of academic research centers, offers guidance on the emotional side of living with lupus. Below are excellent tips from a blog post by Social Worker Priscilla Toral, LCSW on the HSS website that specifically offers help to men coping with lupus.
Lupus Isn’t Only a “Women’s Disease”: Coping Tips for Men with Lupus
Communication is a vital part of coping with the many challenges you may face as a male with lupus. Being aware of what you need and how to ask for support and resources is important to living a healthy life with lupus. Here are some helpful suggestions that may provide help for those looking for support:
- Lupus does not define you or your level of masculinity. Although lupus might make it challenging to engage in rigorous activity, talk with your doctor about your level of ability and decide what activities may be helpful to include in your daily routine. Your doctor may suggest your current activity in moderation or help you to incorporate new activities you may enjoy.
- Communication with your doctor is key to the successful management of your condition. Prepare for your appointments by keeping a log of your symptoms and writing down your questions. Keeping a list of your questions and concerns will help to organize your thoughts, ease concerns related to your condition and ensure you get the most out of your medical visits. Keep important contact information at your fingertips, such as your doctor’s office number, pharmacy and insurance information.
- Lupus can be very unpredictable and invisible. You may look fine to others, but may be flaring or feeling very ill. It’s important to stay informed and educated regarding your symptoms and how they impact you. This will help you to share appropriate information with your health care team and loved ones to ensure your needs are being met.
- Males, it’s ok to express the emotional impact that lupus has on your life. Support can come in many forms and often sharing your thoughts with those with similar experiences is helpful. Reach out to your support system, share at your level of comfort and connect with other males. Talking to a mental health provider may also be helpful in your lupus management.
- Seek help and support. HSS offers through the Social Work Programs Department a number of free and national support and education services including monthly SLE Workshops, LupusLine®, LANtern (LupusAsian Network)® and Charla de Lupus (Lupus Chat)®.