The first time I saw one of those annoying lesions under my arm, I had no idea what was going on with my body. I was (naturally) terrified and kept it to myself until the pain became unbearable. There was a point where HS made me feel crippled and weak, but I’ve found that sharing my story about HS and finding strength and encouragement through other people’s HS stories, has made a world of difference in my life. So for today, I’d love to share with you all a few tips I have for supporting your loved ones with HS.
Do Your Research and Ask Questions
Please feel free to ask any questions you may have about HS. We know… it’s a lot to take in, but if we’re choosing to open up to you, it’s because we care about you and want you to know what’s going on in our lives. Going online and doing research together can answer a lot of questions and help ease a lot of the anxiety of talking about HS with a loved one. If you really have questions, it could also help to go to a doctor’s appointment or see a dermatologist with them just in case you have any questions better suited for a healthcare professional.
Opening up about HS may be difficult for us to do, so having patience is so important (and also super appreciated!). The truth is, most of us have been living with this condition for years, many of us doing so in silence. It can be frustrating to have a condition that negatively affects your quality of life, but often gets misdiagnosed. (Like seriously, all the time.) Most of us have been on antibiotic after antibiotic and have tried various treatments that kinda sorta work. And I haven’t even gotten into medical costs yet…
All this is to say, please try to be understanding of the fact that opening up about this can bring up a lot of feelings of anxiety, as HS can definitely affect your mental health as much as it affects your physical health. It can negatively impact a person’s confidence, self-esteem and overall well-being. Talking about HS is a huge step for us, so just know that we appreciate you for being someone we can trust with such a huge part of our life.
Having to have to deal with any type of medical condition for years on end without really knowing for certain what it is can be debilitating. No one should have to go five or ten plus years (sometimes longer) without knowing what’s going on with their body. Unfortunately, this is the case for many of us with HS.
In my personal experience, I’ve found that a lot of the anxiety I felt around having HS was because of hiding it from so many people I cared about and wanted to know. When we talk about things like HS and spread awareness, and the less “taboo” the issue becomes, the more we can start creating a meaningful change in our lives and (hopefully) the less misdiagnosed cases we’ll see.
Assist With Dressing Wounds (if Comfortable)
For people with HS, dressing wounds is just a part of the daily routine and a lot of those wounds are in hard to reach places. There were days where bandaging my arms felt like training for the Olympics. If comfortable enough (maybe if this is a close friend, significant other/spouse, family member, etc.), helping in dressing wounds can be incredibly helpful!
Back in January, I had my surgery under my arm and having a friend to help in changing my bandages was a life-saver, especially when you’re still recovering and may not feel up to it. Before I got the hang of dressing wounds myself, I ripped a stitch on my very first try. I wish I were joking. Two words: Not. Fun.
Understand Possible Boundaries
There’s no easy way to put it: flare ups can be excruciating sometimes.
Because of this, we may choose not to show up to a social event or we may feel closed off and want to be less intimate during these times. There have been times when I’ve had to cancel plans because a cyst would come to a head and, long story short, I’d need to be soaking in a tub for a while and I’ve more than likely ruined the outfit I was going to wear out anyway. The mental taxation HS can have on a person can also be overwhelming. As someone who’s also an introvert with my fair share of social anxiety, sometimes time alone to prepare for social events or a date is essential for me anyway, so try to be understanding if your loved one with HS seems a little standoffish. Usually, this is nothing personal and it’s not intended to push you away. Even just offering to be there if they need you can make a huge difference.
Shatece Haynes is a HS warrior based in the US.