A woman hunches over as dark waves wash over her.

HS & Grief

Last updated: April 2022

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?


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 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.

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