Hello, I’m Katy and I’m a 26 year old woman with HS disease. The Human body actually baffles me. My body works against me but it is also capable of these amazing things – like magical moments of skin growth.
This is my story…
I was 10 years old when my symptoms started, and it took another 7 years before a Dermatologist diagnosed me with HS. I’m currently employed as an administrator, but HS affects my ability to perform my job. Sometimes, it’s as simple as preventing me from doing tasks that require frequent movement. More and more I’m realizing how those things exhaust me and cause worse flares. Sometimes I have to call off work because the flares are so bad I can’t put on clothes or move. This can be uncomfortable to do because my work environment doesn’t necessarily approve of constant absences. It’s also frustrating because I feel like I could work from home if that was possible – but currently, it isn’t for me. So I just have to call off and not get paid.
I am currently job searching and every time I interview with someone who says they are okay with a flexible work schedule, I hope they will be the one to hire me. I think I could be successful working from home if needed and I wish I could have a job that was flexible and allowed it. I would describe HS as a very painful disease and I think there are 2 types of pain associated with it.
For the first imagine that you have a nasty pimple on your face. It’s kind of inflamed and it hurts to touch or move your skin next to it because it’s irritated. There’s the pressurized pain from the fluid build-up and sometimes it feels like it’s pulsing with pain. You just wish it would burst and go away. That’s what a HS flare feels like, but 5 times worse and in areas that can’t be avoided touching or moving. The second type is the residual pain from tunneling and scar tissue. There is constant inflammation, irritation, itching, and a general discomfort that is also in areas that can’t be avoided while wearing clothes. That means the area is constantly being irritated and bothered.
There are a few challenges I’ve found dealing with HS. I’m beginning to understand how having a chronic disease affects all areas of my health and life. I’m tired all the time from inflammation and have to allow myself to take it easy, but doing that leads to constantly canceling work or plans. This affects both my social and professional life. I’ve had surgeries and different treatments which force my family and friends to help in my healing and that also can be strenuous on relationships.
I want to travel abroad, but it’s hard to think of doing that with this disease. Stress is the #1 trigger and traveling is stressful. I also worry about the healthcare I could get. So HS prevents me from reaching that dream.
Becoming a better advocate for myself is also something I’ve had to do, which has been difficult and I’m not as good at it as I could be. But no one knows about HS and I have to educate them. I also have to remind people I have HS and what that entails. I think about having HS all the time, they think about it when I remind them.
After I got my HS diagnosis, there came a series of treatments that most everyone who experiences HS knows. I went from Antibiotics to topical creams then moving to Isotretinoin (Accutane) and FINALLY a biologic called Humira. The Antibiotics, creams and Accutane did not do anything for my HS. Accutane addresses acne, which has a different pathology than Acne Inversa (HS). A mistake many dermatologists make is assuming this will help, perhaps because of the similar name? But I don’t know anyone who experienced relief on Accutane. I certainly didn’t.
I did however experience a disruption to my life, as Accutane makes your skin extremely and painfully dry. Also, as a woman I had to take a pregnancy test at my doctor’s office once a month. When you’re precariously employed and/or a college student, this can be difficult. Finally, my doctor prescribed me Humira and I was on it for around five years, from the age of 18 to 23.
Around the age of 20 I started feeling like I was having minimal results. The skin on my arms and legs still hurt all the time from residual scarred tissue, old tunneling, and new flare ups. My doctor started mentioning surgical treatment, but I wasn’t interested. I’ve had several surgeries before and I hate being laid up and depending on other people. However, the Humira wasn’t working and the scarring was getting worse and exponentially painful. I was also building up a mental intolerance to giving myself a painful shot every week. At one appointment, my dermatologist looked at me and said “There’s nothing else I can do for you.”
That was when I finally had surgeries.
I have had two of the CO2 laser procedures, which I refer to as surgeries. These were outpatient and done with local anesthesia. I had one in my right armpit and recovery took 22 weeks. I had another in my left upper thigh and recovery took 18 weeks. I had 4 surgeries after that. One was an outpatient surgery on my stomach. Then I had one massive surgery on my left armpit and my left and right upper thighs. I then had a surgery that filled two of those spots with skin grafts and a skin flap. Then another surgery for more skin grafts.
A skin graft is just what you think it is – the surgeon takes a very thin layer of the top of your healthy skin and grows it in a machine. She places it on the open wound, especially when the wound is huge like mine was. This helps the skin cells to grow much quicker and heal over the wound. I had this done twice, to cover three different areas.
The skin flap is a much more confusing and amazing procedure. It was done to make sure I would have complete mobility of my arm/armpit (which, ironically, I am still not at 100% mobility). I have watched a video of this procedure and I still don’t fully comprehend how it works! She basically cut a part of my skin out from my back, right on my shoulder, and then rotated it to be under my arm. She then stitched an entire 6 inch long rectangle of skin under my arm and we hoped it would heal as best as possible.
It’s difficult for me to say how many surgeries I’ve had since I technically have had 6 for skin excision, but 4 that were under general anesthesia. Then for other non-surgical reasons due to the healing wounds, I went under general anesthesia four more times
Now I’m back on Humira even though my doctor wants to start me on Stelara. My insurance company though, won’t approve that. There are 3 stages involved with HS, and I’m stage 3. I think I’ve been stage three since being diagnosed. My condition is definitely bad enough that most treatment doesn’t help. I wish I could just treat the symptoms …mostly the pain, but pain medication is hard to get.
If I could grant a person newly diagnosed with HS a wish for their future, it would be for them to get an early diagnosis so they can get early, aggressive treatment. Going through the motions before you can have Humira is useless and just progresses the disease. More awareness of the disease is needed so that more Doctor’s know what HS is. Patients should get early treatment because there’s not much doctors can do for the already diseased areas except for surgery. If you have a hunch you have HS, please bring it up with your doctor and fight for rigorous treatment as soon as possible. Any preventative care is your best bet from getting to the point where you need surgery.
Yes, I know absolutely 100% that my life would be very different if I didn’t have HS! I’m constantly wishing that I had less painful skin. If I did I could walk around in the summer, clean my room, make dinner every day and travel abroad…all with ease. I hear people who have accepted their diagnoses (whatever it is) as a part of their life and are okay with it. I haven’t gotten there yet. I still am frustrated with the limitations that HS causes me.
I am afraid of what my future with HS may hold. I have many dreams, but HS prevents me from reaching some of those. The ultimate goal is probably to travel more, but I feel beholden to my medications and self-care.
My dream has been to travel to many places for a long time. I want to go to England and France, South Africa and New Zealand. I want to go to the tropics but anytime I go to the beach or somewhere warm I have to prepare mentally for pain and discomfort for the whole time. I have traveled some (within America) and it is a high stress activity. I went to Bolivia once and it was difficult on my skin.
I would also love to go abroad for an extended period of time to work or volunteer. My fear though is that this would go horribly wrong because of my HS. I also would love to be able to take any job. One with little to no health care benefits, in a high stress environment and/or that requires a lot of movement. I have to be aware of what my own limitations are and am learning more and more what these are. But I think eventually I will need to work mostly from home. I am trying to prepare now for what career might allow me to do that. I hope whatever it is, that it will align with my professional goals.
Weight loss is another goal of mine that HS gets in the way of. It can be hard to keep up with cooking and cleaning and any good nutritionist will tell you that the best way to control your diet is to make your own food. I’ve gotten in good exercise rhythms before but a bad flare can break that.
Thank you for your time in raising awareness about this awful disease!