5 Questions I Wish I Had Asked When I Was Diagnosed With Hidradenitis Suppurativa

Having battled hidradenitis suppurativa (HS) for 12 years, most of my small talk begins with “I’m a little tired” and “I’ll live.” If you have the same condition, you’re likely prepared with an arsenal of gauze, Neosporin, cotton swabs and a loaded pillbox at any given time.

When I was diagnosed, HS was largely unexplored and frankly, under-explained. As a 12-year-old, I couldn’t say the words “hidradenitis suppurativa” without getting tongue-tied. Over the years, most of my flare-ups have been treated through surgery and a course of antibiotics. However, the implications of those decisions and the condition itself continue to loom over my everyday life. In hindsight, these are the questions I should have asked my doctor:

1. What does hidradenitis suppurativa mean?

What seems like a teen’s nightmare of acne-gone-rogue isn’t quite as understated. As young as I was, I didn’t realize that I was being diagnosed with a chronic condition; my parents didn’t either. For the most part, I’d say my prayers before bed and hope that this (flare-up) too shall pass. I should have asked my doctor to explain the condition in detail – in terms my family and I understood.

2. What do I do when I have a draining lesion at work/school?

A draining wound at school was the absolute bane of my existence; I would do just about anything to get through the day. My attempts included shoving paper napkins (which was probably unsterile) at the site to stop the bleeding/drainage. I needed to know how to prepare for these unexpected circumstances. I would have liked a checklist of the medical supplies I needed to place in my backpack and instructions on how to effectively care for these skin lesions without risking further infection.

3. How is surgery and scar tissue going to affect my daily activities?

I knew I would be out of commission for a period of time after my surgeries. However, I was preoccupied with the unsightliness of my scars and failed to account for how they could limit my range of movement. It wasn’t until my last surgery that the doctor explained I would experience tightness under my arms as the incision site heals. Three years later, reaching for the top shelf still requires help.

4. Is there someone I can talk to?

Though our loved ones are supportive, they may not always comprehend the emotional effects of HS. There are days you’d feel like Victor Frankenstein’s Monster and no one else understands why. It would be great for medical providers to direct HS patients towards support groups (online or in-person).

5. What does this mean for my future?

This question continues to weigh on me. As variables change at every phase, so do my goals, needs and wants. As a teen, I wondered if I could commit to a sport. When I moved from one country to another, I didn’t know how the climate or living conditions would affect my health. If I should want to have children in the future, how does HS affect the quality of care (breastfeeding when lesions are present, fatigue, etc.) I administer to my child? The answer to this question evolves with time.

When a diagnosis is given, you may not feel ready to ask the necessary questions. Remember that it is OK to reach out to your healthcare provider and ask for clarification. While it’s a rollercoaster ride for most of us, these questions can help HS patients prepare for the inevitable drop.