Ask the Advocate: Triggers

In case you missed it, check out part 1 of this series, where we asked our advocates about their diagnosis.

For so many HS warriors, finding out what triggers your HS flares can be so difficult. We asked our advocates what triggers their HS, how they identified those triggers, and what changes they had to make to avoid flares.

What are your triggers? How did you identify them?

Katy: My main triggers are stress, heat, sweat, and dry skin. I think a doctor suggested stress was a trigger for me, since I went to college immediately following my diagnosis. I pretty quickly started correlating flares with stressful times in my life. Remember, good things can still be stressful! Recently, I went to a beach house with my family, which should have been a relaxing experience. But while preparing for vacation, I was stressed about packing, driving, and being away from home. It caused several huge HS flares. So, something I did for fun ended up being a trigger for my HS. Keeping time for breaks and stress relievers can be helpful.

Heat and sweat go hand in hand. When my body gets flustered and overheated, that triggers my HS. Even if I am not doing anything, if my body is hot and starts sweating, that could trigger HS. Recognizing my reactions to heat and sweat is just something I learned from experience. I now also have tricks that I do to protect my skin from sweating and chafing.

Dry skin as an HS trigger is something I have identified more recently. Since sweat is an HS trigger for me, you would think that the winter would be more comfortable. But winter comes with dry forced-air that dries my skin. This in turn irritates my skin and causes it to create more oils. This irritation causes HS. I realized this because my skin was always uncomfortable in winter, and I realized my face will break out in the winter because it is so dry. Connecting that to my HS made me realize that dry skin can be a trigger for me.

Selina: My triggers are gluten and processed sugar. I also tend to get really bad outbreaks if my anxiety, stress levels, or depression are bad, and also around the time I get my period every month. It can be so frustrating when I'm so good and stay away from my triggers, and then my time of the month rolls around and everything just goes to hell anyway. I avoided all the cookies but still get the pain!

In order to find my triggers, I tried doing the elimination diet. This is when you eliminate the most known inflammatory/hidradenitis triggers and then slowly reintroduce each thing back, 1 by 1. So for example, I cut out gluten, dairy, processed sugar, processed fats, red meat, nightshades, spicy food, and alcohol from my diet. Then after a few weeks of my hidradenitis outbreaks toning down, I slowly started reintroducing each thing back, 1 by 1. At the beginning of 1 week, I'd have a tomato. Then if by the end of the week I had no new flares, I knew this thing probably wasn't a trigger for me. Then on to the next potential trigger! Say I eat pasta and then the next day I get a flare, I know that's probably something I should avoid. It's a slow and tedious process, but it really helped me discover that gluten and processed sugars are my no-nos. Since I realized what my triggers were, I was able to realize the keto diet might be able to help me! Slow but tedious, but definitely worth it!

Rebecca: Stress is a huge trigger for me and by far the worst one. If I'm going through a particularly stressful time, I can feel a flare growing very quickly. Now, when I am stressed, I do everything in my power to try and relax and keep my body calm. I also found alcohol would bring me out in flares. If I drank over the weekend, I found on a Sunday I would find a new flare. I have since stopped drinking, nearly 10 months ago. Also, my flares can be pretty random. I tried cutting out gluten and dairy, but it didn't help me much but I hear it works wonders for others! Smoking may have also been a trigger, but I'm not sure as I quit smoking and drinking at the same time.

What changes have you had to make to avoid your triggers, and how have your triggers changed over time?

Rebecca: I have quit drinking alcohol and smoking cigarettes. I also try my best to remain calm in stressful situations and focus on deep breathing to avoid my body becoming too stressed. Stress is by far my biggest trigger and one that can be tough to avoid as living with HS can be stressful alone.

I found when I was younger, my flares were much more random – but then again, I wasn't as aware as I am now about flares and how my body reacts to them. Since being in my 20s, I would definitely say stress has become a major trigger in comparison to when I was a teenager. Alcohol, also. If I had a big party and drank more alcohol than usual, I would definitely wake up with a flare – usually a bad one!

Check back to read how our HS warriors manage wounds and why they decided to become advocates!