Unmasking the Hidden Pain of Hidradenitis Supperativa

EBONY: Shannon, let’s start with you. Can you share any challenges you’ve faced with hidradenitis supperativa (HS) that have been unique to you as a Black woman?

Shannon Akins: I would say as a Black woman [that] we deal with hyperpigmentation, so the scars show more prominently, and that is scary. Not only that, [living] in Arizona, the re are not a lot of Black couples, so [I already feel] insecure about being a Black woman with a skin condition. I feel for us, a lot of men look for women who [are] perfect or something close to perfection. With these flaws on my skin, it makes me feel like I'm a little bit lower level, like, more in the bottom of the barrel.

EBONY : Paul, what has your personal experience been living with HS and what are some of the challenges that you’ve faced?

Paul Taylor: I think the biggest challenge that I face is not being able to work once it reaches its deepest positions. I've been in and out of work ever since 2019, for weeks to months at a time. Currently, I'm out of work and it's been three months.

EBONY: How does HS show up in your daily life and overall emotional well-being?

Akins : It's affected my daily life in so many ways. When I was younger, it started with me being shy and quiet and I had trauma after my first surgery when I was 14 or 15. They [had to] cut a big chunk out of my [rear end] and it made me uncomfortable. For a long time, I was afraid to be touched by people. As I got older, I started to do more self-sabotaging things like drinking and partying because I wanted to overcompensate and feel normal. The only way I could get comfortable enough was if I was not sober. I was eating all these foods that were not beneficial to me. I was punishing myself because I didn't understand my body, and then I realized I should not punish myself when my body is weak, I should nurture it.

EBONY: Paul, could you tell me how exactly this has affected your work?

Taylor: I'm a photographer and an over-the-road truck driver. [Driving] was killing me and the stress of all of that took my body down. My condition is atypical [so it] expresses itself on my head, neck and face regions and [those areas] are consistently going up and down in pain level. Overall, I’m in pain 24/7. When you flare up badly, your headaches are extreme, you have joint issues to where it feels like you have the flu, and you're fatigued consistently. You're consistently having to drain and bandage, and you cannot go to work after it gets to a certain point.

EBONY: People without this condition have most likely never considered that a non-cancerous skin condition could be so debilitating. Shannon, have you encountered any unique obstacles or experiences related to your race or gender while seeking treatments for HS at all?

Akins: I've had doctors tell me that it's mainly dominant in African Americans, so there's that. But what I see in my comments on social media, it looks like HS affects everybody equally, but maybe it's more common to be diagnosed in Black people. What stood out to me was them telling me that I was too skinny and too young to have this condition. They told me this when I was 14 or 15. I guess they would tell people who have HS that you need to lose weight and it will go away but when they came across me, they're like, “We don't know what to tell you.” There have been many times that doctors have looked me straight in my face and said, “I don't know how to help you. I don't know what to tell you.”

EBONY: Wow. These are dermatologists.

Akins: Dermatologists, PCP and general surgeons.

EBONY: Paul, what emotional toll has HS taken on you and in what ways have you been coping?

Taylor: The toll it is taking is very deep. I'm divorced, and I have four children. This condition was a major factor [in my divorce]. During the time of my separation, I'd been out of work for 10 months, so dealing with those emotions and then dealing with [emotions related to having HS] and the pain of it all took a lot away from me. I've been on someone else's couch or bed since 2021 because I have not been able to recuperate, so the mental toll got me to a place of feeling like a failure. It took all my confidence. The way I look is directly connected with my pain.

EBON Y : Shannon, what are some coping mechanisms in managing the physical and emotional challenges of HS that someone in your situation may need to hear or know that you do that may not be popular?

Image: provided by Shannon Akins

Akins: Love yourself because it takes self-love and discipline and integrity to get there. [ I’ve had] to remove myself from certain [groups] because of stress and that will trigger a flare. I also truly feel work will run you down and you will [flare up repeatedly] if you do not speak up. Maybe they might fire you, but maybe [that job is] not meant for you. When we have HS, we have to put our health at the forefront of everything, and if something is stressing us out, we have to remove it. My peace is what keeps me from flaring, and I choose to be peaceful. [Also], some people say they're not triggered by food, but honestly, food affects a lot of things; mental health, physical health, everything. A lot of people just don't have the discipline to eat healthier.

EBONY: Paul, how has HS affected the inner workings of your day-to-day life and activities? How does it show itself every day for you?

Taylor: I can't start my day like typical people and jump up and brush my teeth, do my skincare routine and throw some clothes on. My [routine] is a 30-minute to an hour process every time I wake up. I have a towel on my pillow because of leaks. I have multiple [pustules] that are active, so I have to drain them, then shower, then get bandaged and get ready. My energy is still low but I'm working on it, doing what I can to get back there, but I can't do the physical stuff I want to do, like martial arts and boxing. I was a flatbed driver [and] I hauled steel, the moment I put any pressure down, I'm leaking everywhere. So, it literally affects 90% of my life. For everything I do, I have to think about my condition. When it comes to going out, what can I eat? All the good stuff that we like to eat, I can't touch it, and if I do, it responds immediately.

EBONY: Shannon, what stage of HS are you in? Do the stages go back down once you're in a good space biologically?

Akins: Right now, I'm in no stage, I'm in remission. I was in stage three, and I started at stage one, but I pick at my skin and that will take you straight to stage three. I had [a condition] where I picked at my skin constantly and it's a way of self-harm. Some people cut, some people burn themselves, but I pick at myself and that was how I was self-harming because I was upset at my body. So, I had to realize what I was doing, and I had to stop.

Image provided by: Paul Taylor

EBONY: Paul, do you feel, as a man, ignored when it comes to having this condition? Do you feel like you're given the proper attention, or people aren't engaging enough with you when it comes to your condition and the responsibilities that you have?

Taylor: I don't get that as much, but I do have the feeling, [that] if I cannot provide anything as a man, especially financially, I feel like I'm no good to anybody.

EBONY: Speaking of being good to anyone, how has this condition affected you as a man on the market looking for love or looking for a relationship?

Taylor: It didn't stop [my dating progress]. Currently, I am dating someone, but it has been a challenge because my person has to be there for me in a manner that I would prefer to be there for her. I truly appreciate her because she's been my backbone.

EBONY: Shannon, how HS has impacted your self-esteem or body image when it comes to dating and relationships?

Akins: I was afraid to date for a very long time. I did not have my first boyfriend or do anything physical until 21 because I needed to know he was for me. So, I'm very slow to [getting involved physically] with men. I've definitely lacked in the sexual part of relationships and sometimes I'm not available for that or at those times I wasn't available because I was in pain or embarrassed. I wasn't comfortable with being naked in front of a man. So, when I was dating, I was dating for the moment and not for longevity because I didn't feel like anyone would want to live their life with someone like me [who] has a skin condition like this. I felt like no one would take me seriously.

EBONY: It sounds like this condition put you in a position mentally where you may have been abandoning people, people who might have really liked you or been into you.

Akins: Yeah, I absolutely have done that. I have and I'm single to this day because of it, but it's OK because they weren't supposed to be a part of my timeline. I really believe that God places people in your life for a reason or season, so if I did do that, maybe they weren't meant to stick around because I feel like someone who really was for me would be here today. I do have someone who is still [waiting] but, I have so much confidence and so many boundaries, I'm really making sure any man that I put any time into, is all about me.

EBONY: Paul, what keeps you going besides your children and your girlfriend?

Taylor: Now I've experienced something heavy in life to where I understand that, despite not being where I want to be, I have to be grateful because I've still got shelter. I've been able to pay some bills.
I'm not able to take care of the children like I want to, so I'm dealing with that, but [ I’m happy to be] close to my children and have all [these] different things to be grateful for. I know it's nothing but God.