Hi, my name is Geir and I am a 37 year old male with HS Disease.
This is my story…
I was 15 when my symptoms started, and it took 2 years before a Plastic surgeon diagnosed me. A few years back, I had to quit my job at a poultry plant after 13 years because HS prevented me from having a physically demanding job. In addition, I was burned out from being in pain 24-7.
With the help of the Norwegian social services, I started school in 2015 and have just now completed a bachelor’s degree in digital media. Sitting in class and listening to lectures was a bit better for my health than lifting big turkeys all day. I am now temporarily employed at the Norwegian Psoriasis and Eczema Association, which is the Norwegian patient organization for all skin diseases. Besides being temporarily employed, I have been working as a volunteer with them since 2015.
The search for full time employment continues, but I have already experienced that having an office job is MUCH better for my health than a heavy factory job. It will allow me to not need as much sick leave as before. As I have a bachelor’s degree in digital media, I love to work with computers, design, advertising and being creative, especially with words as I love to write.
The pain from HS Disease is almost constant, but the severity varies and I thankfully rarely experience the most extreme sort of pain. I feel it 24-7 though, and it does take its toll on me both physically and mentally and makes me feel exhausted most of the time. I am also convinced that HS affects the rest of my body, because I also struggle with a lot of pain in my joints, muscles and bones for no apparent reason.
The pain is, for me, the biggest concern followed by scarring, puss, and smell. Other challenges I have encountered living with HS include relationships, anxiety/depression and ignorance.
I’ve been single for years and years because I feel ashamed of being intimate with anyone do to HS flares in my groin. I’ve been struggling with anxiety and depression virtually all my life. Most of it is because of severe bullying throughout my childhood, but having HS too is like throwing gasoline on the fire. It has definitely made the mental challenges even worse.
Also, the ignorance of people who don’t believe you when you say you can’t do something because of flares and/or pain. I really hate hearing phrases like; “walk it off”, “it’s not that bad, come on”, “you don’t look sick” or “you were fine yesterday”.
In the past I’ve tried the prescription medications Accutane and Soriatane (Neotigason). Both proved to be effective for my HS, but the side effects became too much to bear. Currently I manage my HS by staying away from all negative stress. I have actively worked to eliminate everything, from friends to commitments to guilt so I can feel more at ease in my life. I also wear loose and comfortable clothing. I do wear jeans and a shirt when out in public, but as soon as I come home I switch to sweatpants so big that I can pull them up above my flares on my waistline.
I’ve had 6 surgeries for my HS. There have been two under each arm, one to remove HS on the top of my butt and one on my waistline. Every time, the surgery just moved the flares to another place on my body. When I had my last surgery (waist line), the wound hadn’t even healed yet when I started getting flares again. The most effective surgeries I’ve had though, was when I had skin grafts under each arm. The HS did return, but a lot less severe.
I don’t have any food triggers, but I try to eat some anti-inflammatory foods like berries, raspberries and strawberries to help my body fight the flares. I use a lot of celery in my cooking, and eat olives as well.
Also, I don’t feel guilty for spending a day from time to time on the couch. I’m not lazy, but I’m giving my body (and mind) a chance to recuperate. I’ve also become comfortable with giving myself a treat (comfort food, candy, soda) when I’m in a lot of pain. If the mind feels satisfied the HS will calm down, but only in moderation of course.
There are 3 stages of HS, and according to the dermatologists I’m between stage 2 and 3. If I could grant a person newly diagnosed with HS a wish it would be that they would be cured.
My childhood was a hellhole filled with severe bullying, so suffering from depression, anxiety and low self-worth probably wouldn’t change without HS. I would probably not be as chubby as I would exercise and move around more though. I would also still have my old job, and probably be promoted to some kind of manager position.
I’d have more money, because I ruined my personal economy with excessive shopping to make me feel better because I felt ashamed, vulnerable and full of pain. Without HS I would probably own a house instead of renting. When your renting it’s hard to have a pet, but if I owned my own place I would have had a dog years ago to help with my depression.