I’ve seen so many articles on social media about what you should have in your HS sex tool kit, how to wear lingerie that hides your scars or abscesses, about how to work around a flare when you’re “in the mood” (which isn’t something I understand). What I don’t see is real talk about the feelings about sex and intimacy for those of us with HS. This topic brings up some fears, insecurities, and emotions we may not have known even existed. I know I don’t focus on it and don’t think about it much, but when it came up in a conversation with a friend the other day, I realized how overwhelming this topic, and all of the baggage that comes with it, really is.
I’m jealous of what “normal couples” have. They don’t have to navigate around wounds, drainage, flares, bandages, insecurity about scars, or an inability to relax and allow themselves to be lost in the experience. I am unsure if that’s reality or what I’ve gleaned from watching too much TV. Regardless, it’s not something I’ve ever experienced.
When your husband has to ask before giving you a playful smack on the ass to ensure that he won’t cause you pain, when you have to strategically plan sex during the 13 minutes you may have between flares (which unfortunately may come at 2pm on a Monday) when you feel like a burden or inadequate because you can’t satisfy your spouse in the normal sense of the word when you feel ashamed for being ashamed of your body; there is so much baggage that comes with this disease.
The strange thing is that I’ve never felt as confident in my skin as I do now, thanks to my recent wide excision surgeries. I’ve never wanted to flaunt my armpits until now. I feel like my self-esteem rose exponentially after my surgeries, but it still hasn’t been able to help me overcome my insecurities with sexuality.
If you’re someone who has truly said “fuck it” and embraces your HS and all that comes with it, I envy you. I am jealous of your self-love and acceptance. I strive to get there and hope everyone does well; we deserve it. We are trapped in our bodies that have betrayed us and robbed us of some of life’s most wonderful experiences. Our disease has added an element of difficulty to everything in life, even the most mundane tasks.
I’m sure we’ve all had good and bad experiences when it comes to sexual encounters, even those without the burden of HS. Most of the time those without HS don’t have to withstand a line of questioning about having an STD or be accused of having one because you were trying to spare yourself the embarrassment of the “I have HS” discussion. They don’t have to withstand being looked at like they are scarred beyond recognition, that they are not beautiful in the traditional sense. Questioning self acceptance begins young when we are bombarded with advertisements and beautiful people which we are not qualified as because we were mangled and scarred. Constantly carrying our HS as a shameful secret we work so hard to keep. Trying to disguise the smell of our weeping abscesses, ensuring we didn’t leave marks or bleed on the chair when you got up, or the toilet seat. Constantly working to appear “normal” when you can’t move your right arm because of the golf ball sized abscess tucked carefully in there just waiting to drain at the most inopportune time. Your co-worker finding a piece of gauze that came out from under your bra and saying how disgusting it is to find it on the floor.
All of these experiences shape us, they reinforce to us that we are different, we are not like the others, not worthy enough. How do I continue to convince myself of this when the little voice wants to keep telling me something is wrong with me? This is my struggle. I KNOW I’m worthy, I KNOW I’m beautiful, I KNOW I’m deserving, I KNOW that there are few people as strong as me. I don’t understand why my emotions can’t keep pace with my mind.
I’m now 42 and don’t struggle with most of the insecurities I did in the past, but I can’t seem to shake my sexual inadequacies, no matter how hard I try. It has nothing to do with my husband who is the most patient and amazing man. He tells me daily how much he loves me and how beautiful I am, not to worry about my scars, that he thinks I’m perfect. But no matter what, I can’t shake my insecurities free, to be uninhibited, to believe what he tells me. He doesn’t understand why I can’t accept his word for it and love me the way he loves me. I strive to feel the way he feels about me someday.
I want to raise my daughters to be different, to accept themselves as they are. To love themselves completely, to feel worthy of love and admiration, to learn to be inhibited and know their worth, to know when to turn around and walk away when they are not valued, to quiet the voice that tries to grab their ear and make them question themselves, to always rise above, to keep their heads high, to listen to those who tell them how important and special they are, to feel the love they have to give and offer it in return.
Not everyone has the same experiences, but I know based on my time in the HS community that so many of us struggle with sex, intimacy and HS. I hope if you glean one thing from this it’s that if you do struggle, you are among friends here and if you don’t struggle, you are worthy of the peace that brings, and I know I will continue to strive to get there…maybe one day I’ll arrive.
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