Patient perspective: Hidradenitis suppurativa

INTRODUCTION — This topic was written by an individual patient diagnosed with hidradenitis suppurativa (HS). It is intended to offer clinicians insight into the experience of a single individual from that individual's point of view. This description of a particular patient's experience is not intended to be comprehensive or to provide recommendations regarding diagnosis, treatment, and/or medication information. It is not intended to be medical advice or to be a substitute for the medical advice, diagnosis, or treatment of a health care provider based on the health care provider's examination and assessment of a patient's specific and unique circumstances.

For related clinical topics, please see:

●(See "Hidradenitis suppurativa: Pathogenesis, clinical features, and diagnosis".)

●(See "Hidradenitis suppurativa: Management".)

●(See "Surgical management of hidradenitis suppurativa".)

UpToDate also offers patient education materials. "The Basics" topics are short overviews written in plain language, at the 5^th to 6^th grade reading level, that answer the main questions a patient is likely to have about their condition. You can share this content directly with your patients:

●(See "Patient education: Hidradenitis suppurativa (The Basics)".)

BACKGROUND — From the onset of puberty, I can recall pimples in the areas of my body where I sweat, particularly my underwear line, armpits, and inner thighs. The pimples were small but noticeable. Sometimes they would come back in the same area, and sometimes they wouldn't. There was nothing distinct about them, nothing to make me think they were anything other than your standard pimple with a whitehead and sometimes a blackhead. They certainly weren't anything to make me think I needed to seek medical treatment.

When I was 21 years old, I developed an abscess in my buttocks that was so painful that I had to seek medical care. I was told that I had a perineal abscess and was sent to an outpatient surgery center for an incision and drainage. I found the procedure to be awkward and unpleasant, so much so that I had a list of questions prepared for the postoperative follow-up appointment. When I asked specifically what caused perineal abscesses to happen and what could I do to prevent them from happening, I was mistakenly told that they were caused by poor hygiene and that if I wanted to prevent them from happening, I needed to take better care of myself. I was told to shower twice daily and to not scratch myself.

I left the follow-up appointment mortified and even more embarrassed than I was before. I truly believed that I had a hygiene problem. I would go on to spend the next eight years too embarrassed to return to any doctor, and instead meticulously analyzed my hygiene. I changed everything from the products I used on my body to my laundry detergent. I questioned if I was allergic to my cats. I wondered if it was my diet. I tried numerous drugstore products to treat acne, but nothing helped. In fact, these pimples continued to spread and get worse.

DIAGNOSIS AND TREATMENT

Initial experiences — I was diagnosed with HS at an urgent care appointment. I had gone there because I saw a poster in a hospital elevator about methicillin-resistant Staphylococcus aureus (MRSA). I was given a printout about HS and told that I needed to see a dermatologist. When I saw the dermatologist, I was sent home with a prescription that would subsequently fail to improve my symptoms.

A year after that initial appointment, I returned to see if there were any other treatment options. The HS had significantly spread since that first appointment, so the dermatologist referred me to a clinical trial. I would spend the next three years in that trial until I voluntarily withdrew, as I was trying to start a family. After that, I chose to see a functional medicine doctor who prescribed additional treatments that did not help as well.

There were two more dermatologists whom I went on to see until I landed at the one I see now. Those two dermatologists prescribed me a variety of treatments. However, I was given little explanation for the medications I was prescribed. The lack of communication was frustrating. My HS was advanced at this point, and I was in severe pain. I tried the therapies they recommended because I wanted to get better, but I never had confidence in any of them.

Current plan

Treatment experience — My current dermatologist has explained all the possible outcomes for the treatments I am receiving and where she hopes I'll get to. I am consistently made to feel comfortable expressing my concerns and end goals for treatment.

Her determination to treat this disease matches my determination to get better. It has made those dark days when I felt so hopeless a distant memory. When I am in pain, I have a valuable resource to help me. When there are upticks in activity with my HS, I have a safe place to vocalize my concerns and means to combat that activity. With the care I am under now, I feel like I am part of a team who shares the same goal, and I can't express enough how valuable of a resource that is.

Not only is my disease well managed now, but I am also confident and comfortable with my health care team.

Communication — My current health care team incorporates the core concepts of patient- and family-centered care where applicable. I am a widowed adult with no immediate family involved in my care, so communication is between myself and my health care team only.

•I am made to feel involved and informed about my health care. I feel respected, and it is clear to me that all my questions are valued.

•I have been made aware of all avenues of communication and can easily contact someone on my health care team with questions or if I need an emergency appointment because of an HS flare.

•I do not feel pressured into making decisions, nor do I feel bad about asking questions. I am consistently directed towards resources if no one is available to immediately provide them for me.

IMPACT OF HIDRADENITIS SUPPURATIVA ON MY LIFE

●Daily life – HS impacts every single aspect of my life. When this disease was at its worst, I had trouble sleeping, walking, performing household chores, showering, taking care of myself, and performing essential duties of my job. I was both depressed and anxious.

Depression came in the form of hopelessness to stop it and frustration with my body's lack of ability to do the things I'd wanted it to do. Anxiety was brought on by both the unpredictable nature of HS and the fear that people would find out I had it and place judgment and stigma on me.

Hiding this disease from society was a very real part of my experience for a very long time. I have misrepresented my symptoms to coworkers in the past and took due diligence to hide drainage. There were many times that I refused to sit down in public places for fear of leaking onto seats.

●Personal relationships – There were impacts on my family relationships as well. Misunderstanding of HS symptoms caused disagreements and poor communication. Because I was initially told that my symptoms were related to hygiene, it was ingrained in me that this was my fault, and I would project that onto my personal relationships by not explaining thoroughly what I was going through or experiencing. I was afraid they would think it was my fault too and be even more upset with me.

●Financial burden – The financial burden of HS is very real and worth discussion. The cost of daily wound care, body washes, and products to treat the chronic nature of this disease add up.

●Positive changes – There have been positive changes, however, in the last few years. I am more confident in my body of knowledge surrounding this disease and because of that, I feel more comfortable explaining it to people in and out of my circle. I have also accepted that I am not to blame for this disease and now work diligently to help other patients understand the same thing.

RESOURCES — There are so many good organizations that now exist to help the patient community. The HS Foundation provides resources for both providers and patients, works to fund important research, and hosts various educational events throughout the year. Hope for HS provides advocacy, support, and education to the patient community via in-person and virtual support groups and advocacy initiatives. HS Connect provides resources and education for patients. The International Association of Hidradenitis Suppurativa Networks aims to provide advocacy and awareness for patients.

FINAL THOUGHTS — The road to well-managed HS has taken me nearly 20 years. I wish there was more optimism and less misunderstanding in the beginning of my journey. I really wish it had been ingrained in me from the beginning that HS is an immune response and not something that I'm doing to myself. Carrying the blame for such a painful and debilitating disease wreaked havoc on my mental health for years.

I want patients now to understand that HS is a medical condition that requires medical care. It is not something we bring upon ourselves. It is important to seek information through credible and validated sources. Because of the areas of the body that HS affects, it is important to feel safe, not judged, and most importantly, confident in the health care team.