Tell us about your symptoms and treatment experience. Take our survey here.

A woman hunches over as dark waves wash over her.

HS & Grief

Dealing with HS is tough. There's no other way to say it. When I go through periods of being well and having no flare-ups, I feel great! So great that I can fall into the trap of believing I'm "cured". Let's talk about these feelings and how I'm working on accepting that HS is here for life.

Feeling invincible

I am one of the lucky ones. Since going on medication for HS, my quality of life has improved in many ways. I have way fewer flare-ups than I used to and when I do get one, it's not as painful (most of the time). Due to this, I felt that I was cured and that HS couldn't hurt me anymore. 

I realize now, that this is a dangerous mindset and HS can in fact hurt me. During the summer heatwave, my HS was just as bad as it was pre-medication and I felt angry. Angry that HS had "won" yet again.

Dealing with bad news

Due to a perianal abscess, I developed a fistula which will require several surgeries over the years to heal. I had my first surgery back in July to insert a cutting seton and I was healing great.

Now, a few months later, the pain is back. I recently had an MRI scan which showed no healing as of yet. Procedures are also canceled again due to the current situation in the world. I felt devastated. I truly thought I was "winning" and that I was going to be miraculously "cured". How did I deal with this news?

Grieving

After receiving the news that my fistula hadn't gotten any better, I went through a few days of grieving. Grieving the life I expected to have. I was angry at my HS and my fistula for taking away my normality.

I suddenly got angry at the little everyday differences that I have to make in my life. Angry at having to use a peri bottle after bowel movements and angry that I always have to be near a bathroom in case my fistula decides to give me problems. I allowed myself to grieve for a few days and then I moved on.

Acceptance

Acceptance is key. It's hard to do, but it's needed. I am trying to accept that I will never have full control over my HS. Yes, I can make lifestyle changes in order to give myself the best chance but if HS wants to show up, it will. Sometimes I actually thank my HS (yes I know how that sounds)!

I thank my HS for making me a strong woman, I thank my HS for making me appreciate the good things and for helping me make better lifestyle choices like giving up alcohol.

Keeping the faith

It isn't easy, but I try to keep having faith that my health will improve. Hope is a powerful thing. If we didn't have hope, we'd have nothing. Don't get me wrong, my hope is realistic. I'm not miraculously expecting to be free from HS. I understand that it will always be a part of my life. I do hope to be fistula-free one day though, I will not try to rush this, my body will heal at its own pace.

Although I understand that HS may never go away, I keep the faith that it will improve over time with a mix of medication and lifestyle choices. Having a community of people certainly helps me keep the faith!

Who knows, maybe one day they'll find a cure but if not, I'll keep doing what I can to give myself a better quality of life.

By providing your email address, you are agreeing to our privacy policy.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The HSDisease.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.

Community Poll

Have you taken our In America survey yet?