Leaving Your Mark

I was a little bit of a late bloomer. I didn’t get my period until I was 14. I went away to summer camp when I was 13, and one of the girls there was telling us all about her period, and she gestured at her clothes and said, “Well, you know, you have to wear black when you have your period.” No, I didn’t I didn’t know, but I nodded anyway, because I didn’t want to spill the beans about not having my period yet. I tried to look wise, like I had the secret handshake.

Many HS clothing disasters

I have had many clothing disasters in my lifetime so far. One time I left the bathroom with the bottom hem of my knee-length skirt caught in the waistband of my underwear. In my defense, the skirt was a circle skirt, and very voluminous, so I couldn’t always tell when the entire hem was down properly. That was worth a few yipes from my co-workers!

Another time a front-closing bra just wouldn’t stay snapped shut. It was as if Super Girl kept trying to pop out of my chest! But no, it was just my unruly bra not wanting to cooperate. And then there was the underwear that didn’t want to stay put. I thought they were comfortable, but then I realized they didn’t want to stay up around my waist... and I was wearing a skirt and carrying an arm full of heavy stuff out of the grocery store. You get the idea.

Why am I telling you all of this? Put all of these together and add hidradenitis suppurativa on top.

Forever patting myself down

I often have ladies’ sanitary pads pasted in unusual places inside my clothing. I am forever patting myself down like I have been arrested and I am checking myself for weapons – mostly because I am checking to make sure everything is adhered correctly and is not in danger of falling out. But I can’t always catch everything. If it’s a long day out in public, I stand a greater chance of embarrassing myself. Have you ever had 3 maxi pads fall out of your clothing? I have. Has it not looked like a regular menstrual cycle, but rather like something has died and, well, not healed correctly? If you have answered yes, you are part of my club. Welcome, friend.

There is a certain piece of my wardrobe that I absolutely love, and that is leggings that have a skirt attached. I love wearing skirts, but I also love to wear leggings underneath for a number of reasons. First, it helps to keep all of the gear under the skirt in place. If I need to wear extra bandages, it’s great. Also, I happen to live in a state that is a desert, so we get these thermals; the sun heats up the earth, and it causes winds, so my skirts get whipped up around my ears. It’s so much easier for me not to show all of my bits if I have leggings on underneath. Also, having a skirt plus leggings on means that I have extra layers of protection if something happens with my lesions.

One particularly bad lesion

There have been times that my groin and bottom area have been miserable with lesions, before I got laser treatments and found a biologic that actually works for me. I can’t even tell you how many times I could barely walk from the pain. I was going through undergarments and towels and bandages like hotcakes.

There was one particular time I had to go to a doctor’s appointment and I thought I had protected myself enough to go out in public, wearing my skirt/leggings outfit (in black!) plus lots of bandages. Boy, was I wrong. There was this one lesion I had been begging and pleading with to just LET GO, please LET GO!, but it wouldn’t by the time I needed to leave, so I packed it up and got in my cab (I’m now unable to drive because of other health issues).

Feeling the distinct pop of my HS lesion

About two minutes to my destination, I felt the distinct pop and release of fluid despite all of the stuff I had put in my leggings like a football player while trying to also be discrete. Dang it. If it could have waited, I would have had access to a bathroom and about 3 whole rolls of toilet paper.

We pulled up and I opened up the door and got out, but then turned to close the door and glanced back. Wait a second – did I leave a mark on the seat of the cab???? I couldn’t tell! I couldn’t tell at all! The seat was so stained from other people, I couldn’t tell if I had leaked through, or if I was still safe! I shut the door and tried to be cool, but then I headed for this building and the public restroom (mortified), and I could feel the warmth and faintly smell it (very mortified), and then I started the process of cleanup. Many of us carry an arsenal of products with us for times like these, so I started working on it, but the inside of my clothing indicated that I might have leaked onto the seat of the cab. This still bothers me to this day.

You are not alone

I stayed overnight with a friend who had a vague idea of this disease, but not how much it affected me. I put all of my pads all over the inside of my clothing and crossed my fingers, but I was in a lot of pain from some of the active lesions that were like little volcanos. I woke up in the morning, and of course, I looked like a little battle had taken place and there was some carnage. So the trick was to clean up without making my friend pass out, who was very squeamish around gore and blood. I got some soap and a dark towel and gently went to work. That is always the trick – cold water and gentle handling.

So the battle extended further than I thought (down to the mattress!) and it took a lot of rinsing. I feel like if I were smarter, I would have traveled with my own sheets. Eventually I got everything out from her bedding and mattress, but it took a lot of trips to the faucet and applications of soap.

If HS is your constant companion and you have clothing mishaps, it is important for you to remember that you aren’t alone. There are many ways for you to make your mark on this world. This is only one of them.