Dating Someone With Hidradenitis Suppurativa

Going on a first date with someone is hard, let alone someone with a rare disease like hidradenitis suppurativa. Many people don’t know what it’s like to be with someone with a rare disease, but I’m here to tell you what it’s like to date someone with HS, even though I’ve never personally gone on a date.

I may not want to disclose my disease right off the bat because I’m afraid of how you will react. I don’t know if you will show disgust, sympathy, fear, sadness or confusion because you don’t know about the disease.

I may not look sick on the outside because it’s an invisible disease and it’s hard to tell if I’m having a “good” day or a “bad” day.

I may cancel the date or take a rain check, not because I’m nervous or scared on the day of the first date, but I might have a flare that came up and got angry and I have to take care of myself that day.

I might be insecure of my self-image because I’m afraid of how you’d react to my scars from previous flares and current flares.

People around me might be judgmental because I might be wearing something completely different, or they might see my flares and talk about it out loud and act like they don’t have a care in the world, but on the inside, it hurts me, a lot.

If you are that someone who is dating, in a relationship or married to someone with HS, then I thank you for being supportive each and every step of the way! If you are meeting someone for the first time, keep an open mind. It would mean a lot to me to have someone support me every step of the way, whether you’re at the dermatologist’s office with me getting my medication or whatever it may be. Thank you.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via Tijana87.

Find this story helpful? Share it with someone you care about.

Related to Hidradenitis Suppurativa

drawing of a woman's face partially covered by her hair and wearing sunglasses

A Day in My Life During a Hidradenitis Suppurativa Flare-Up

I hate going to sleep at night, especially when I’ve had one of my “good” days. These are the days when I can make it to drinks with friends and even make it to the gym. The days when I can go to spin class and not leave in excruciating pain. You might even see [...]
woman enjoying summer sunset

My Daily Life With Hidradenitis Supperativa

“What’s the cure?” I focused intently on my mother. She looked at my dermatologist, searching her face for a bit of hope. “Unfortunately, there isn’t one.” The doctor slowly took off her gloves and looked at us. “There’s treatment options, of course. But it will take a while to find what works for you.” She [...]
Mother holding baby, looking down at baby

Trusting My Gut About My Baby’s Health

During the first week home from the hospital, my daughter, for two nights, refused to sleep lying down. My husband worked, so my mother and I took three-hour shifts holding her in the rocker. She slept, and we struggled to stay awake. My mother said the rosary and I surfed the internet looking for answers. [...]
Father and daughter visiting gravestone of deceased mother

Why We Talk About the Ones We've Lost

For all those who talk about their late loved one. For all those who talk about their loss.This is why we talk about them. Hint: It is not for attention.We talk about them because we love them. In life and in death.We talk about them because they are still a part of us. And always will be.We [...]