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My name is Kristen and I am 27 years old. I have been suffering from H.S since I was 23 years old and over the years my condition has gradually gotten worse. For many of us, H.S greatly reduces our quality of life and even worse---breaks us down emotionally. For a long time I thought these support forums were silly but then I realized--maybe our stories will push doctors to try and understand this condition better. Many of us are left to suffer, having gone through treatments that simpy don't work or worse---none at all--- because of the lack of science and research regarding this illness or simply not having health insurance.
Growing up-- I was always swimming, playing basketball, cheerleading, skating, surfing or bodyboarding. My level of physical activity was well above average, and I was always doing something. I would come home from school and grab my longboard and skate for hours. This continued well into my adult life. I didn't even own a car until I was 22, so I would often ride my bike or skateboard to work. Despite this, I started to struggle with my weight around 23. I'm a tall girl, standing at 5'10, so gaining a few pounds never looked bad on me when it would happen. Even at age 23, having weighed 170, I didn't look over weight and there was still no shortage of attention from the opposite sex. However, it was at this point that I knew it was time to shed a few pounds and my weight was starting to bother me. ( I posted an image of my size when H.S showed it's ugly face)
Little did I know, something terrible was about to happen and it changed my life forever. When I was diagnosed with H.S, I was pretty healthy, let alone never had a problems with my skin. I never suffered from acne and I don't think I ever even got a single zit on my face or body prior to my diagnosis. Even today, I still have great skin, despite this terrible illness.
I still remember when my first lesion appeared on my leg. It was painful and I was freaking out because I had no idea what it was. It eventually went away and I didn't think much of it--- until it came back...Then another and another. Next thing I knew, I had multiple lesions on my right inner thigh and groin. This was scary, because I was starting to wonder if I had an STD, and if that were the case, that could only mean one thing--my long term boyfriend at the time must have cheated on me and gave me something. I went to the ER because it was so painful and out of nowhere, plus I didn't have health insurance, so I couldn't just make an appointment somewhere. The doctor who saw me said they were cysts, but that was it. They cut them open and sent me on my way. In fact he told me it was not uncommon for this to happen if I wore tight underwear. So in my head, I was like damn, maybe I should stop wearing underwear lol..
Anyway, it gradually got worse, and after multiple visits to the ER, I finally got a diagnosis. The doctor at this time in particular, told me I had H.S and there was no cure. He couldn't tell me what caused it because no one knows what causes it. This was frustrating, as it still is. He suggested that I see a surgeon.
As many of you know, having H.S greatly impacts your life. Exercise is nearly impossible and little things like getting a good nights sleep or simply walking can prove challenging and painful sometimes. I could no longer skate without being in pain. Riding a bike was just as hard. Each time I did anything remotely physical, the next day I would have multiple lesions and could barely move. I finally realized---physical activity was making my condition worse.
Excessive walking made it worse.
Biking made it worse.
Skating made it worse.
Being out in the heat made it worse.
Long hours standing made it worse.
Dancing made it worse.
Gaining weight made it worse.
No matter what I did----it was getting worse.
Im in advanced stage lll now.
How does someone avoid weight gain when physical activity increases the severity of H.S? Even worse, weight gain also increases the severity of H.S. Too often, doctors will tell us, "YOU MUST try to lose weight!"---because increased weight is a factor in severity. It is not the cause of H.S, but it will make it worse for common sense reasons.
I have always worked in the food industry. As a cook---a hot kitchen is not ideal for an H.S sufferer. I have lost many jobs because of this. No matter what job you hold, sooner or later, you will have to call out. But what do you tell your boss? " Hey, I can't come in today because I have this screwed up condition that renders me immobile sometimes!"...At this point you have to tell them what you have, and the thought of your boss googling this condition is enough to want to die, because we all know how horrible and disgusting it sounds when reading about it or seeing images of it on the internet. No one will understand what it's like except for those who suffer from it. The thought of others knowing you have this condition can be overwhelming.
Depression is almost inevitable. H.S affects all parts of our lives. Comfort becomes a thing of the past and eventually you start to forget what it was like to do something as small as being able to shave your own armpits or go to the beach without feeling like your secret will be exposed at any moment. Want to play volleyball? Nope. Want to ride bikes at the beach? Nope. Want to go to the club later? Nope. Next thing you know you are living a sedentary lifestyle pushing all your friends and family away. People start to see you as lazy and you might even start to see yourself as lazy. You reach a point where you no longer know what part of your life you are still in control of. You can no longer tell the difference between self neglect or real problems. H.S has a way of making you feel like your life is over. Doctors have a way of making you feel like it's your fault you have H.S as well. As if we brought this upon ourselves. I refuse to believe that. This disease came out of nowhere and has been ruining my life ever since. I recently decided it was time to take control of my life again. I started walking 2 miles a day and started a 1500 calorie diet. By the sixth day, I had walked myself into a bed ridden state. 4 days I was laid up in bed unable to move without being in serious pain. How can people live like this?
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