Hidradenitis suppurativa: “You’ll live with this disease your whole life, but make it your strength.”

Hello Elisa, and thank you for agreeing to share your story with Carenity.

First, could you tell us a little about yourself?

My name is Elisa, I'm 28 years old. I'm originally from northern France and have been living in Paris since November 2016.

I'm passionate about hairstyling, alternative music (metal and rock), and tattoos. I have almost fifty of them.

I live with hidradenitis suppurativa and ankylosing spondylitis.

Photo courtesy of Elisa

When did the first symptoms of hidradenitis suppurativa appear in your life?

The first signs of hidradenitis suppurativa appeared when I was a teenager. At the time, the disease wasn't widely recognized, but I suspected it was what I had, especially since both my mother and her brother were affected by it.

I was around 15 when I developed my first pilonidal cyst. The pain was so intense that I still remember it vividly today.

Can you tell us about your journey to diagnosis? What impact has the disease had on your daily life, and how is it being managed today?

Getting this disease recognized was a long and difficult road… Everything started again a few years after that first pilonidal cyst.

In August 2017, I was serving as a volunteer police reserve officer. One Sunday, after falling on my tailbone, I ended up in the emergency room... and there it was again: the infamous pilonidal cyst. At 6:30 p.m., I had to undergo emergency surgery.

I woke up from the operation and had to call my commanding officer to tell him he wouldn't be seeing me for at least six weeks.

Recovery went fairly well. I returned to work and, a few days later... it came back.

A major surgery was scheduled for January 2018. At that point, I wasn't receiving any real follow-up for hidradenitis suppurativa. I only had a surgeon doing her best to help me.

The surgery went ahead, but the wound was much larger than expected. I was discharged, but three days later I was back in the emergency room with sepsis and a streptococcal infection.

I could have died that day, and honestly, I don't think I fully realized it at the time.

That period was pure hell. I couldn't work anymore. I was constantly absent. I seemed to end up in the hospital every other day. I hit rock bottom.

Weeks blurred into months. Eventually, I reached the end of my contract with the police force. I'll never be grateful enough to the psychologist I saw at the time. She was the one who finally put a name to what I was experiencing: burnout.

Even after that, I wasn't out of the woods.

My body was sick, my mental health was falling apart, I had lost my job, and at one point I became homeless, staying with friends in different parts of Paris. I picked up a few temporary jobs, but nothing stable.

Between not being taken seriously by healthcare professionals and feeling invisible to the social support system, I was fighting two battles at once.

And I was only 21 years old.

In 2021, I finally received a diagnosis of hidradenitis suppurativa.

Deep down, I already knew. Still, having it confirmed felt like a huge relief, even though I was still carrying a lot of anger and resentment.

We tried several long-term treatments after numerous surgeries, including both short- and long-term courses of antibiotics. They would work for a while, but eventually the disease always came back.

Since then, I've changed dermatologists and now receive much better care. I finally have a doctor who listens and understands.

Most importantly, I've been on biologic treatment for over a year now, and honestly, it's changed my life.

I went from having ten, sometimes even twenty flare-ups a month, to having one to five flare-ups every three months. It's night and day.

It's not a miracle cure. You still need to pay attention, listen to your body, and be patient while finding the right dosage. But it's been worth it.

Hidradenitis suppurativa is still painful and disabling. My skin remains extremely sensitive. I can only wear cotton clothing to avoid friction and reduce flare-ups.

And that's without mentioning my ankylosing spondylitis, which regularly adds another layer of difficulty.

Are there any misconceptions about hidradenitis suppurativa that you'd like to challenge?

NO, hidradenitis suppurativa is not contagious. I wish people would stop spreading that myth.

And NO, it is not caused by poor hygiene.

Our skin is simply affected by a disease. That's the simplest way to explain it.

The condition causes abscesses, cysts, and other painful symptoms, but it has nothing to do with cleanliness.

What has this journey taught you?

One thing I've learned is that if you have any doubts, or if you feel that a healthcare professional isn't listening to you, get a second opinion.

Never be afraid to advocate for yourself.

Finding the right doctor can completely change your quality of life.

Photo courtesy of Elisa

If you could speak to the young woman you were at the beginning of this journey, what would you tell her?

Don't stop fighting.

Yes, there were times when you were angry at the whole world, but you're going to get through this.

Even though you'll be living with this disease for the rest of your life, make it your strength.

And what would you say to people living with hidradenitis suppurativa who still don't feel comfortable talking about it?

Don't be ashamed of who you are.

Talk about your condition with the people around you. Don't stay silent.

And DON'T MINIMIZE your mental health either.

If you feel the need to talk to someone, whether it's a loved one or a support organization, do it. Go for it.

There will be moments of doubt, sadness, and discouragement. That's part of living with a chronic illness.

But YOU ARE NOT ALONE.

A big thanks to Elisa for trusting us with her story.

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Take care!