Athena Gierbolini, president of Hope for HS, a nonprofit advocacy group for those affected with hidradenitis suppurativa (HS), speaks on the quality of life burden she has experienced during her HS disease journey.
Living with hidradenitis suppurativa (HS) can be isolating due to the physical and psychological impact of the disease, said Athena Gierbolini, president of Hope for HS, a nonprofit advocacy group for those affected with hidradenitis suppurativa (HS).
What Impact has HS had on your quality of life, both physically and psychologically?
I can't think of a single instance where this disease hasn't impacted my life. When we talk about the physical, there's obviously the impact of the disease and having to live in a chronic state of pain, but then also there’s scarring. So, I have had quite a few surgeries to remove the HS, but I have extensive scars. I would much rather prefer the scars than the disease, but there's really no way to fully eradicate this once it’s started on your body.
As far as physical limitations go, if I'm in a flare, I have limited range of motion. If I have a flare in my arm, everyday tasks like brushing my hair, getting a cup high off of a shelf, if it's in my waist or below, bending down. I have a basset hound, and he pulls me a lot; he's a strong little fella, and walking him becomes difficult. There's also exhaustion that comes with this. It's very high maintenance in terms of having a chronic disease. When you have something that drains a lot, it's a lot of upkeep in terms of bandage and wound care. It impacts my finances as well, because insurance companies aren't particularly eager to help us with day-to-day maintenance in terms of bandages and supplies. And the ones that seem to work are always the most expensive.
Before I even knew of tapes that would work under the armpits, I used to just walk around with a frozen shoulder and have paper towels stuffed in my armpits because I had no idea what to do. And then there's the emotional, and I could spend hours talking about that. One of the things that I do in my patient advocacy is I run support groups through Hope for HS, and we spend most of the time talking about a lot of the emotional and psychological impacts.
The support groups are great, because there are not many places for patients with HS to be out with this disease. People hear it and they Google it, and then they see these pictures online and they look at you then—they think, does she have that? And then the places that it's located, we're not necessarily excited about people knowing about it anyway, and so I'm not overly eager to tell someone that I'm in pain today because I have an abscess in my groin.
So, the nature of the disease in so many ways makes it very isolating. And then, until you're in the capable hands of a knowledgeable HS specialist or a dermatologist that really understands this disease, you feel ashamed and embarrassed because it's not pretty. Pus is not something fun to talk about. Boil is not a pretty word. It's not pleasant to talk about. And then, it produces odor, it drains, and damages your clothes. And every time I go somewhere in public, I'm so afraid that I'm going to soil the seat that I'm sitting on. I have clothes, I have so many tops that I've damaged. It really impacts your whole life in every aspect of your relationships.
I was afraid to hug my nephews. One time I did when he was super, super small and he said to me, "Oh, you stink." And I became really weary of getting too close to people then because like nobody wants to be the person that smells. And so when people ask me how this impacts me, I could talk about this for hours because in every way—when I'm in the shower, this disease is impacting me. When I'm laying down at night, it's impacting me, and every moment in between.