How Living With Hidradenitis Suppurativa Made Me Stronger

After getting my first cyst and being diagnosed with HS, everything changed.

Updated 12 months ago, January 12, 2024

How do you come back from your lowest point? How do you drag yourself out of that black hole of nothingness that has consumed your life? For me, it wasn’t easy.

Every morning, I wake up, look in the mirror, take a deep breath, and tell myself: “You’ve got this.” See, I have to encourage myself to keep going even when I know that I’m going to be in a good deal of pain.

Before I was diagnosed with Hidradenitis Suppurativa, I was a normal teenager who had nothing to worry about besides school and sports.

After getting my first cyst and being diagnosed with HS, everything changed.

My life suddenly revolved around frequent bandage changes, ruined clothing, and plenty of tears. It seemed as if my skin disease gradually took over every aspect of my existence. I found myself withdrawing from everything and everyone. I stopped wanting to get out of bed in the morning. I stopped wanting to eat because certain foods would cause me to get even more cysts. I just wanted to lie in bed all day. Without even realizing it, I slowly slipped into depression.

How do you come back from your lowest point? How do you drag yourself out of that black hole of nothingness that has consumed your life? For me, it wasn’t easy.

At my lowest point, everything felt hopeless. I remember waking up one day and just breaking down. I couldn’t stop the endless flow of tears.

You’re stronger than this, I told myself.

Then I washed my face, walked to my room, and started writing. I wrote down everything that I had bottled up for so long. I wasn’t going to be held back anymore. I wrote down every ugly word I’d said in my head over the last few months. Once I got everything down on paper, I felt so much better. It was like a weight was actually lifted off of my shoulders. I felt I could overcome HS no matter what. I came to the realization that this disease would not defeat me.

If I could give someone else dealing with HS or any other disease advice, I would say to find something that centers you and helps take your mind off of what you’re dealing with. Whether you get relief from exercising, drawing, painting, hiking, or confiding in someone else who’s dealing with the same issues-do whatever helps!

My escapes are writing, reading, and listening to music. There’s something about getting engrossed in a good book that helps me forget about the cyst that just popped up under my arm or the pain from another cyst I can feel forming somewhere else on my body. There’s something about listening to a song that resonates so deeply that the emotions you’ve been holding onto just flow through you and tears start flowing down your face.

Living with HS or any disease is definitely a struggle. It is a burden that I didn’t want, but for which I’m also somewhat grateful.

I’ve had to become so strong — mentally, physically and spiritually. Things that would break other people roll right off of me because I’ve faced so much worse already. I’m sure there will be times when that strength gets tested by this disease, but I will be ready for it.

I’ll leave you with a quote by Napoleon Bonaparte that really speaks to me: “Courage isn’t having the strength to go on—it is going on when you don’t have strength.”