You Have Boils? I Get Those Too!
With the number of times I have heard “You have boils? I get those too!” you would think that I would be used to receiving this reaction when I share my Hidradenitis Suppurativa symptoms.
When I hear this, I generally smile a warm smile on the outside, but on the inside, I’m cackling like a villain in a children’s movie. A part of me wonders why people who have not been diagnosed with HS feel the need to make meaning of or validate my experience by relating it to that one boil they had that one time. Yet, another part of me can appreciate others for trying to make sense of my disease in a way that is personal to them. This is the dichotomy of wanting to share your disease, but also wanting to keep it personal so that you don’t feel insulted once it is all said and done.
Trust me, you don’t want any parts of HS
I can’t count how many times I have had someone tell me they had a boil under their arms or in the groin area as a way of relating to my experience. The truth is, I don’t think many people understand the chronic, recurring nature of HS. While it is helpful on a surface level that many can relate to the pain one boil causes, it can also invalidate my experience by assuming that my HS is anything like your one boil. On a given day, I have multiple sites that have open wounds with many other sites ripe and beneath the surface desperate to break through and leave me in an inevitable state of agony.
For most people, having an acne breakout or boil present on the skin does not require wound cleaning and dressing. For many of us warriors, we are left awkwardly applying medical tape and gauze while hoping that it will (a) stick and (b) be enough to hold the drainage from the wound. This is likely different than the experiences of many who are trying to relate a single boil to HS.
Understanding my experience
Instead of immediately using your own experience to understand HS, I would rather you use the following questions when trying to understand what I go through. Oftentimes, when sharing about my disease I would rather feel like someone wants to understand the disease itself and how it personally affects me on a daily basis. I personally tend to not like questions that ask about treatments I have used or questions that downplay my experience. Thankfully, being diagnosed with a chronic illness has been key in allowing me to more effectively recognize my needs and communicate these needs with others.
How you can more easily understand my experience without being insensitive:
- I am sorry you have to go through this. What is your experience like?
- How are you doing mentally and physically?
- How can I support you through this?
- I researched your disease. Is there anything else you want me to know?
Have you ever experienced painsomnia?