Letting Go Of Shame: Alice's Journey Opening Up About Her HS

The Editorial Team at HSDisease.com is highlighting HS warriors and their journeys in our Voices of the Community interviews. We talked to Alice, and she shared how she's learned to let go of shame and open up to others about her hidradenitis suppurativa.

My hidradenitis suppurativa always comes up when I say that I limit or avoid gluten and dairy, and people will often ask me if I'm intolerant. This is the point where I say that I have an autoimmune disease and certain food seems to trigger it. If they ask further, I explain it pops up in the place where the skin folds, with extremely painful "nodules" that sometimes open. I'm open about my diagnosis because I don't see the point in hiding it anymore. It didn't benefit me in the past to be silent about my pain because very often it was mistaken for a small, temporary health inconvenience. This is a very unknown disease, and if we don't speak, the situation will never change.

Letting go of shame about hidradenitis suppurativa

Shame was part of my baggage. The moment I did let go of that, the weight on my shoulders became much lighter. I told myself that the pain I had to carry around every day, including all the adjustments in my life exclusively for my HS was enough, and I didn't want to carry the weight of being ashamed of my disease like it was my fault. It's not and it never was. I would never be disgusted by someone who tells me they have eczema, so why should I feel so ashamed of my disease? What's different?

I learned that all that judgment was all in my head because once I decided to open up about my disease, everyone was extremely understanding and surprised because I didn't "look sick." It's a disease that can make us feel dirty, but it's honestly part of the psychological burden of HS. I've also learned that every time I feel myself slipping down with my mental health, I can and I have to reach out. Not only for myself but for the people around me. We're not easy to deal with when we are in a dark place and HS is kicking hard. We all know how many people with HS struggle with anxiety, depression, and body image. Having psychological support is literally as important as having a diagnosis and a treatment plan. Being in a better place with your mind will allow you to tackle your health struggles or lifestyle changes much better.

Stress was a major HS trigger for me

There was a moment when I realized how much stress I was putting on myself to have a perfect lifestyle. I would never eat certain foods or skip exercise because I was too afraid of what was going to happen if I did otherwise. I realized that being more relaxed while still being mindful of my actions and listening to the cues of my body was a much better option than being extremely rigid.

I was limiting myself too much, and all those "I must eat this and not this, I must exercise, I must this, I can't that..." were a source of stress, ultimately triggering my stress response and worsening my HS because of the number of bad feelings that this cycle was creating.

Doing my best in improving my lifestyle is my part of the role. It's incredibly difficult to find a doctor who can provide pharmaceutical treatment (Humira, in my case) and also have a holistic vision of the body and how lifestyle can improve or worsen your HS, at least here in Italy.

Keep yourself informed!

If you are stage 1 or at a point where your HS is still manageable, I think there are so many things to try that may massively improve your situation before turning to medicine.

My advice would always be to take a good look at the food you're eating. In general, dairy, gluten, trans fats, and too much added sugar are the triggers that worsen my inflammation.

However, I find that the biggest trigger for me is stress, and I easily go out of balance when I don't sleep enough or have poor sleep. Having a good morning and evening routine is a must for me. In the morning, I take some time to exercise (usually 30 minutes) in a way that is not too stressful for my body. So a lot of walking, yoga, and pilates, sometimes with weights, sometimes a light run. I find this is the sweet spot because I don't feel too drained.

I always try to keep in mind that my system is already working hard to keep balance with an aggressive disease like HS, so adding too much external stress, including exercise, can be counterproductive. In the evening I take my time to wind down, usually with a warm shower, and plan a good 7.5 to 9 hours of sleep, depending on what I have to do the next day.

Keeping yourself informed is also important, because in our case very often we are much more informed than our doctors. If you find a good doctor, you can have room for conversations.

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