I’m a Woman Living With HS. Here’s How I Navigate Dating and Relationships

Gracia Lam

Imani Futrell, 26, was around 11 years old when she first noticed a strange bump on her skin. It wasn’t that big, so she wasn’t concerned. However, as she entered her teen years, more started to appear, and they were getting larger. It wasn’t until she was 18 that she was diagnosed with hidradenitis suppurativa (HS), a chronic, inflammatory condition that causes painful fluid-filled lumps that can leak and leave scars. Black women, in particular, are at a higher risk of developing HS, which carries a lot of shame and stigma due to its appearance and the location of the nodules, which can show up on your armpits, genitals, butt, or under your breasts—anywhere skin rubs on skin. When Futrell started dating, the chronic condition added another layer of complexity to the search for a meaningful relationship in a looks-driven world. By sharing her experiences with HS on her TikTok account, Futrell has taken control of her narrative and empowered others to do the same. Here’s her story, as told to journalist Julia Craven.

When I started dating in my 20s, I was petrified because I literally would never tell anyone that I had HS. The only people who really knew were my mom and my grandparents. It was a secret I’d kept for a long time. I was always shy and bullied down bad. At 5'9", I was the biggest in my class and not popular with boys in high school. I had these painful bumps on my body and low self-confidence because of it—and the way I looked in general.

Don’t get me wrong, I love being Black. I love my beauty. I love who I am now, and I’ve embraced it. But when I was a kid, a lot of girls at my school were light-skinned, had natural hair, and grew up in these nice, beautiful houses and were able to do whatever activities they wanted. But then there’s this dark-skinned girl with this health condition coming from the hood of New Haven, just trying to be as friendly as possible and fit in. I thought that guys would never speak to me, and now, on top of that, I have these bumps in these hidden areas—I painted that picture in my head.

So, up until college, when I first started dating, I didn’t really tell anyone because I was afraid of the reactions that I might get. I remember having one nodule in my groin area, and this guy asked, “What’s that again?” I just played it off. I was like, “Oh my goodness, this is just a hair bump. Haha.” It was a disservice to myself, but I was spending so much time trying to please them, trying to make them happy, trying to distract them from what I had that they mostly didn’t seem to notice. My thinking was if they think I’m cool, if they think I’m down, maybe they won’t care about my HS.

I also tried to hide it. I’d turn the lights down and minimize contact with parts of my body where I was having an active flare-up. I’m just thinking, “Oh my God, what are they going to say?” Some of those relationships wouldn't last long enough for me to get into it. But I've always had to be aware of it, which kind of messed me up in dating. I thought that because I had HS, I somehow wasn’t as good as other girls.

I’ve only been in one big relationship, and I talked to him about my HS a month into our dating. I was very comfortable with him at the time, and I felt ready to go ahead and explain my situation, but it was very hard because I had never done that before. I feel like it’s a bit easier now that I’m more comfortable with myself. But it still is hard to this day—meaning, just dating in general while worrying about my hidradenitis.

I feel like a lot of people will never understand until they see it firsthand. And the idea of sharing that is a little scary sometimes—I have pain, boils, and lesions that are leaking. I'm always cautious about the smell. Sometimes, there is a scent that comes from HS, and I have to make sure I have deodorant on hand. Also, I have to make sure that the deodorant I’m using won’t clog up my pores, which creates new nodules and just makes a mess out of it. I can't shave because when I do, more come back, and it’s just like, “Oh my goodness, here we go again.”

Imani Futrell

Imani Futrell (Mott)

Imani Futrell
Imani Futrell

The scarring also makes me a little insecure, as I have quite a few in my armpit. It pains me to see my skin that way. I can be self-conscious, keeping my arms down because I never know if I’m smelling too bad, if the scent is coming out of the boils, or if the nodules are going to leak. These are things that are on my mind. A lot of people think it’s an STI or something you can catch, even though you can’t. [HS is caused by an immune attack on hair follicles and has nothing to do with hygiene or other factors.] I’ve seen things like that online: “Oh my goodness, that looks so contagious. Stay away from me.” And that’s the thing I’ve always had in my head; even though no one has ever said that to me, it’s just nerve-wracking to know there’s that stigma.

My flares also can be triggered by what I’m eating at the time, and I have a couple of foods that will make my symptoms worse. So I have to be conscious of that when I go out on a date. There’s this concern that if I say, “Oh no, I can’t eat this,” they will respond with, “Well, why?” Then you feel like you have to keep making up excuses.

I am currently single. I love my independence and freedom but it can definitely take a toll on me at times. I'm like, “Is there anybody out there who can handle this?” But at the same time, I feel like if a person really loves me and respects me, they would be willing to embark on this journey with me.

I want to share my condition with a partner and be comfortable and myself in front of them. I used to do dating apps. It was a bit easier, given that I could talk about my condition from behind a screen. If they didn’t like it or feel comfortable with it, we could just part ways, or I would just block them [laughs].

Now I hope to meet someone the “organic way” or in person. Recently—for the first time in a long time—I told a potential date, whom I met through a coworker, about my HS before we went out. I usually never tell anyone until after I’ve made a connection but I wanted to be straightforward about it. I showed him a few articles about HS, and as of now, I have not received a text back. I got stood up for the date that we had planned.

However, I know I’ll meet someone soon, and I know it will honestly be worth the wait. Because when I meet him, it’s going to be an experience and bond that I will treasure. I know I'm a good person, and I know my qualities but it's like, dang, now I got to tell them about this.

My advice for people who want to talk about HS with a partner is to speak on it only when you feel comfortable. Do not ever let anyone take you out of your comfort zone. You will know when the time is right—always trust your gut.

You don’t have to do anything to “prove yourself” either. I’ve talked to many guys and I always thought that maybe if I showed them that I’m a great person physically, mentally, and spiritually, they would accept me for who I am. I used to always put other people first. At the end of the day, you are all you’ve got—and no one has you like you do—so always put yourself first. The dating scene is tough in general, so be patient and kind to yourself. I know it is hard to have HS, but that doesn’t make you less of a person. Nobody is perfect; nobody is better than anybody. Differences are what make us special and unique. Don’t ever let this condition stop you from living your best life while dating.

I decided to talk openly about this on TikTok because there are so many girls who look like me who are scared. I get messages each day from people asking questions and telling me I’ve helped them be more confident about their HS. At the same time, it’s helping me feel like I can share more information and raise awareness about HS online. My followers, friends, family—everybody who's encouraged me—help boost that feeling. To be honest, I do still have my days where I'm upset, when it feels like it gets to me. But when I see those messages? It makes a big difference

I didn’t have that growing up. But there are a lot of young girls who look like me, and I wouldn't want them to go through the same thing I went through. There are a lot of people who aren't educated about HS. So I feel like when I speak my truth on it, it helps spread awareness.

I wake up every day knowing I have this condition, but I’m able to keep pushing. Every chance I get to open my eyes again and breathe the fresh air that's outside, it’s another day for me to keep going and show that HS isn’t going to bring me down. There’s so much life and so many things to see, and I don’t want my HS to hold me back from that.


Originally Appeared on SELF