Note from Admin: One of the things that we often see and hear in patient discussions is questioning why we don’t have a larger supply of HS knowledgeable medical professionals. Slowly but surely, that supply is increasing. Here’s what a current medical student has to say about his journey to learning more about HS.
Patients with Hidradenitis Suppurativa (HS) often face immense difficulties navigating the demands of
their daily lives. They are often asked to maintain their professional, familial, and social responsibilities
while shouldering the burden of this often invisible, yet physically and emotionally draining, chronic skin
condition. For many, this journey can feel lonely especially if they are not acquainted with others who have HS or have family members and peers who are unfamiliar with the disease. That is where the regular support group meetings hosted by the Hope for HS advocacy group provides a much-needed sanctuary for HS patients seeking visibility, community, and information.
I had the opportunity to attend one of the virtual support group meetings via Zoom recently where I saw the crucial role a strong community plays in the overall well-being of HS patients. The meeting began with a reminder of ground rules, all based on values of empathy, respect, and creating a safe space for everyone to share their experiences. This was followed by introductions, as each attendee described their relationship with the disease. I was surprised by the breadth of stakeholders present at the meeting; there were HS patients, family members, advocacy group members to guide the conversation, clinicians, and myself, the medical student, hoping to learn about the patient experience.
During the meeting, HS patients and their family members shared their experiences with HS and the
hurdles they faced in seeking treatment. As I listened intently, I found their words to be filled with a mosaic of emotions: frustrations about navigating the challenges of their disease, fear about social stigma and being unable to perform their daily activities, and uncertainty about their future quality of life. Yet, the common denominator within these emotions was the constant feeling of hope. In their journey they displayed unyielding perseverance, and, in their words, they expressed immense hope about overcoming their disease and maintaining their independence. Each member of the support group meeting empathized with each other’s frustrations but also shared each other’s feeling of optimism.
Living with HS and its associated stigmatization can be isolating for many patients and family members.Rayad Shams, Medical Student and HS Research Fellow
However, having access to a support group allows patients to find comfort in knowing that they are not alone in their struggles. It gives them validation and a sense of belonging while living with this disease. I plan to continue attending these meetings regularly because listening to their stories, fears, and hopes have been truly inspiring.