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Why Finding A Doctor Who Is a Good Fit Is Important When Living With Hidradenitis Suppurativa

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“There are always new treatments and research on hidradenitis suppurativa (HS). We’re not giving up and won’t until we find something that improves your symptoms. I promise.” 

My dermatologist said these words to me at the end of a follow-up appointment. I spent most of it crying out of frustration and pain. My HS had gotten worse for some reason, and like most flare-ups, I couldn’t figure out why.

HS is an autoimmune condition that affects the skin. Living in a body that has multiple lesions and boils isn’t easy. I frequently have limited mobilization and feel uncomfortable wearing sleeveless shirts, even if it’s 90 degrees out. This also weighs on my self-esteem and affects me mentally, which is why finding a doctor with good bedside manner, like mine, and an interest in advocacy matters just as much as having knowledge about HS.

I’ve seen numerous dermatologists since being diagnosed eight years ago, and I’ve been lucky to find specialists who have heard of HS—some were even considered experts in the field. But until now, I hadn’t had a doctor who fights the insurance company for me; cares about my mental health just as much as my physical health; and never gives up on me. 

Previous doctors have told me things like “Even if these lesions heal, you will be left with scars” or “I haven’t had any patients over the age of 60, so either HS patients die early, or it goes into remission.” Great, just what I want to hear at an appointment. I only saw these doctors for brief periods, because I always left in a worse mood than when I arrived. I wanted a doctor who offered solutions and showed that they were on my team. 

When I moved to Los Angeles in 2014, I was determined to find one who fit these qualities. I found a dermatologist who seemed compassionate and knowledgeable. I stayed with her for about four years. However, there came a point where she said, “We’re running out of options.” I was always bringing in new studies or clinical trials that looked promising, and while she listened and looked into them, I still felt like I was running the appointment. I was already exhausted from living with HS; I didn’t want to have to play doctor too. It was too much. And her hopelessness was rubbing off on me; I needed hope and reassurance. 

In 2018, I found an HS clinic at UCLA. It turned out to be the hidden gem I was looking for. Before the appointment, I was sent a long questionnaire about my symptoms, previous treatments and mental health. When the doctor walked into our consultation, I felt like a whole person, not just an HS patient. I felt comfortable talking about my symptoms and showing her lesions in sensitive areas, like my groin. I didn’t feel the embarrassment that I felt with other doctors. 

She spent time discussing pain management options and reassuring me that I was in good hands. She cared about my depression and anxiety and how it related to having HS. She took charge, and I felt cared for. I felt hope for the first time in a while. She gave me referrals to other specialists who could help. I left the office feeling in a better, not worse, mood. I trusted her. I felt heard.

I know how it feels when you meet that first dermatologist who has actually heard of HS. Your heart soars, and you’re filled with relief and hope. And you should be! It’s difficult to find those doctors. However, I also encourage you to keep looking if it’s not a good fit beyond that. Every HS patient is unique and has different needs. If you find that you are too embarrassed to show your doctor the lesions and boils on your breasts or in your groin area, that’s a sign to find someone else. Or if you feel uncomfortable with your treatment plan and scared to approach your doctor about it, maybe it’s time for a new one. Your comfort matters. 

For all of these reasons, it’s important to have a doctor who not only knows about HS but will also be your advocate and listen to your needs. Living with a chronic illness like HS is exhausting, frustrating and complicated. You deserve a doctor who eases some of the burden by bearing some of the weight you’ve been carrying around. Someone who reassures you that they are not giving up, like mine did.

Originally published: December 10, 2020
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