Lupus Isn’t Only a “Women’s Disease”: Coping Tips for Men with Lupus

Did you know that males can get lupus too? While it’s a fact that lupus affects women 9 times more than men, according to research lupus is more aggressive in males than women. One aspect that should not be overlooked is how to cope with this condition, especially one that’s been long characterized as a “women’s disease,” which can feel additionally isolating and stigmatizing and can become a barrier to seeking medical care or support.

The Psychosocial Impact on Males with Lupus:

A pilot study* conducted with a group of male lupus patients demonstrated that participants of the study were frustrated and depressed with the unpredictability and invisibility of lupus. The majority of participants reported emotional distress related to the inability or limited ability to work and/or perform physically intense labor. This was also tied to their thoughts about social expectations of masculinity. One participant said, “Pain is weakness.” Male lupus patients also expressed a desire to be connected with other male patients for support, education and a sense of identity. Additionally, many of them had not met other male patients with lupus, which they expressed often left them feeling vulnerable and alone in coping with this illness.

Support for Males 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.
  • You can find help and support. Here at HSS through the Social Work Programs Department we offer a number of free and national support and education services including monthly SLE Workshops, LupusLine®, LANtern (LupusAsian Network)® and Charla de Lupus (Lupus Chat)®.

How You Can Help:

If you are a male 18 years and older diagnosed with lupus, you can participate by taking this one-time (10-15 minute) survey. By completing this survey, you may potentially benefit yourself and others by helping create awareness of the specific needs that male lupus patients have. The information you share with us will be anonymous, confidential and kept in a password-protected database.

To participate in the survey, please click the following link: https://www.surveygizmo.com/s3/3744163/LupusMaleSurvey

*Pilot study can be found here: acrabstracts.org/abstract/pilot-evaluation-points-to-male-specific-educational-programming-for-males-with-sle/

Reviewed on August 23, 2018.

Priscilla Toral, LCSW, is the Program Manager for LupusLine® and Charla de Lupus (Lupus Chat) ® programs, national peer based support and education programs for people with lupus and their loved ones. She is responsible for the planning and operational oversight for program initiatives, training and supervision of program staff and volunteers, psychosocial assessment and social work intervention with patients and their families.

 

The information provided in this blog by HSS and our affiliated physicians is for general informational and educational purposes, and should not be considered medical advice for any individual problem you may have. This information is not a substitute for the professional judgment of a qualified health care provider who is familiar with the unique facts about your condition and medical history. You should always consult your health care provider prior to starting any new treatment, or terminating or changing any ongoing treatment. Every post on this blog is the opinion of the author and may not reflect the official position of HSS. Please contact us if we can be helpful in answering any questions or to arrange for a visit or consult.