Embracing Change: Kim's Journey With Hidradenitis Suppurativa

Editor’s note: This post contains images of Kim’s open hidradenitis suppurativa boils.

The Editorial Team at HSDisease.com is highlighting HS warriors and their journeys in our Voices of the Community interviews. We talked to Kim, and she shared with us the most difficult part about telling others about her HS and her advice for fellow HS warriors about advocacy.

Editorial Team: If you had to pick one, which area of your life has been most affected by HS?

Kim: The area of my life that has been most affected by HS is my relationships. I have become very conscious of my body and how the HS has changed it. Starting a new relationship with someone has been very hard. Having to explain to them that you have a disease and that you have lumps, bumps, and open wounds on intimate parts of your body is not easy and not something I have been able to do so far.

People will assume that you have an STI or that you are not clean. I get the flare-ups under my boobs, under my armpits, my bum, and on my bikini/vaginal area, so getting into a relationship with someone when the most intimate areas of your body don’t look “normal” is difficult. If I do get close to someone, I have to make sure it’s when I don’t have a flare-up or when the lumps are less visible. Having HS and getting into a relationship will require me to trust the person I am with, and for them to also learn and have an understanding of HS and how it impacts my life on a daily basis.

Telling others about my hidradenitis suppurativa

Editorial Team: How do you tell others about your HS? Is your diagnosis something you share openly or only with those closest to you? Why?

Kim: It has been hard telling people about my HS and also figuring out how I am going to tell them. A lot of people think it’s just an ingrown hair or boil that I can easily pop or pull the hair out of. I will usually explain to them what happens to my body during the flare-up and Google information for them so they know what the symptoms are.

As to whether I openly share it with people, it all depends on who I am talking to. If I am talking to family or friends, I am very open about it. They know the struggles I have been through with it, are not judgemental, and are more understanding of it. I will openly show them my scars and the changes HS has made to my body. It makes it a lot easier to show them so they have a better understanding. It’s not something I would want to share with just anyone, because at times it can be embarrassing and I wouldn’t want people to judge me.

Every HS warrior is different

Editorial Team: How do you play an active role in your health? What advice do you have for someone just starting treatment about playing an active role in their health and treatment?

Kim: I always try to make sure I eat healthy food and exercise. I have found that exercise has played a big part in reducing my flare-ups. It is also a good way to relieve stress, which I also think contributes to the flare-ups I have. It is not always been easy staying active, but you have to ensure you dedicate some time to do so since it will benefit you long-term. I definitely think there is a lot of room for me to improve my health, especially in terms of finding which foods trigger my HS and trying to find out what foods will be more suitable for HS sufferers.

I have learned that not every person is the same, and something that works for 1 person will not necessarily work for me. You do have to be very patient. For someone just starting treatment, I would tell them to make sure they are prepared for change and ready to sacrifice certain things in order to make life that little bit better. Being healthy is very important, and although it may be tough at first, it will benefit you in the long run.

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