Flares in Unusual Places: Yes, HS Can Occur On The Back!

I have had hidradenitis suppurativa for 19 years. For most of those years, I have been able to hide my HS with my clothes. This is because my HS occurred in areas that are usually under clothing, such as my armpits, upper thighs, and under my breasts.

Hidradenitis suppurativa in typical areas

These are typical locations for HS to occur. According to the HS Foundation, HS usually appears on "the underarm, under the breast, fold of the leg, genitals, on and between the butt cheeks." The foundation lists these locations as an identifier for diagnosing HS. They say there are three points, one of which is that “the lesions occur in typical areas: in the armpits, under the breasts, the groin, skin creases of the stomach or sides, around the genitals or buttocks.”^1,2

Hidradenitis suppurativa in atypical areas

In recent years, however, my HS has started to flare in unusual places. I have experienced HS lesions and abscesses on the back of my knee, side of my neck, my back, higher on my chest, and on my lower thigh.

People who experience HS lesions in unusual places, such as those I just listed, may face a delay in diagnosis. I am sharing my experience with HS lesions in those unusual areas to show that HS lesions can show up on many places on the body, not just the typical areas that doctors may look for.

As my HS becomes more diffuse, so do my scars. The scars left by HS on my thighs, neck, back, and sternum are harder to hide than the ones in skin creases such as my groin and armpits. I feel frustrated by this because my HS is becoming much more visible.

Feeling confident with visible HS

My HS is more visible but I don’t want to cover my entire body to hide these scars for multiple reasons. First, it is uncomfortable. I live in a hot climate. If I wore long sleeve shirts and long pants all the time, I would become overheated and sweaty. Sweat is a trigger for me, so this would not help my HS. Second, I like to experiment with what I am wearing. Having fun with fashion helps to build my confidence. Sometimes this means I wear a fun flowing low-cut sleeveless dress! Other times I wear shorts and a cute tank top. Both of these outfits show my neck, chest, legs, and arms, where I have active HS flares and scar tissue.

Finally, as hard as this is, it is important to me to show that I am not ashamed of having HS. Covering the scars and flares would be literally hiding myself from the world. I want to continue to have fun with clothes and wear what makes me feel confident. This shows me and others that skin can be scarred and still be beautiful.