Hidradenitis Suppurativa: A Patient’s Perspective 

Hidradenitis Suppurativa (HS) is a chronic, disabling and deforming inflammatory skin disease for which the complex pathophysiology is easily overshadowed by the often misunderstood and underestimated impact on quality of life. A condition that has been plagued by misinformation and limited data due to a host of reasons, HS is finally stepping into the spotlight with an exponential increase in peer reviewed publication and a fleet of new therapies on the horizon. However, to fill the longstanding gaps in diagnosis and care it is of the utmost importance to see this life altering condition through the lens of the patient. Only then can we truly create a welcoming and nurturing environment for so many who have been disenfranchised and even failed by the medical system. Presented here is one such perspective, from someone who has lived with HS for 35 years. - Dr. Adam Friedman 

---

Dear Dermatologist, 

I wish you knew how much courage it took me to come to this appointment today, and how embarrassed I am to talk about this, let alone show it to you. I don’t even like looking at myself in the mirror and now I have to show this to someone else. I know you’re a doctor and I shouldn’t be fearful, but I don’t know how you could expect someone not to be. 

I’m here because I’ve reached a point where this has impacted my life so much that I don’t know what else to do; I feel alone, gross, ashamed, and depressed. I am in constant pain when dealing with a flare; I am embarrassed that it’s gotten this bad and don’t know what can be done about it. 

I haven’t told most people in my life about this. I have kept it a secret for so long and I don’t know what to do now that I’m here, trying to get help. I’ve been doing this on my own for so long that I don’t know what to expect from my visit here today. 

I have hidradenitis suppurativa (HS). 

Here’s what patients like me need so desperately from you: 

I need to be reminded that my HS is not my fault 

I need to be told that this disease can impact anyone, regardless of age, race, sexual orientation, beliefs, intellectual/developmental or physical disabilities, blood type, size, shape, or geographic location. 

I need a partner in my treatment. I’m not a “sprint” patient; I’m a “marathon” patient. 

I need to be told that there is hope for a better life with HS. 

I need to be told that mental health struggles with HS are real. 

I need to be told that my pain is real. 

I need to be told where to find good, factual information on my condition. 

I need to know there are others like me and where I can find them. 

I need to know I can reach out to your medical assistant when there’s an urgent need for an injection. 

I need to know what my flare plan is so I can do the best job of managing my HS. 

I need to know that you will walk with me through this journey. 

What I don’t need is to leave your office feeling more shame than I came in feeling. I don’t need to be told to lose weight or quit smoking. I don’t need to be told that this disease impacts women more frequently than men, or that it impacts a specific race more often than it does another. None of that helps me, none of that reassures me, and none of that helps me on my treatment journey in dealing with my HS or getting an HS diagnosis for the first time. 

I wish you could understand the impacts this disease has had on my life and how it affects me physically, mentally, emotionally, socially, and financially. There isn’t a part of my life that hasn’t been impacted by my HS. My relationships with everyone in my life have been affected by this disease; I don’t recognize myself sometimes. 

If I had the courage to tell you all of this, I would have, but coming into this office today was one of the hardest things I’ve ever done and I know that by doing this, my life will change for the better. Please stand by me while I begin my HS journey. 

— Brindley Brooks 

---

ADAM FRIEDMAN, MD, FAAD 

• Professor and Chair of Dermatology, George Washington University School of Medicine 
• Director, Residency Program 
• Director, Translational Research 
• Director, Supportive Oncodermatology Program 

BRINDLEY BROOKS 

• Founder and Executive, HS Connect