Hidradenitis Suppurativa

[FireFlexx093]

Hi, I'm new here :). I've had HS since 11 and now 23. Although I have never received any medical treatment for my HS.

This disease really is a cruel one in the way it grips its victims from the outside - in. The psychological aspect of the disease had been the worst part for me.

Since 11 and up until the age of 15 or 16 I had no idea what this disease was or that it was even a disease at all. The thing that caused the most psychological damage for me was when my mum took me to the GP and they said that I was getting the boils from not being clean enough and from then on that's what I thought was causing all of the flares. I would scrub myself religiously to try and make myself clean enough and thought that popping them would get out the "dirt" from within me. It's horrible to think that I probably wasn't the only one at such a young age believing they were dirty and disgusting because of this horrible disease. I remember I would try to use needles to to pop them even if they weren't ready to go.

I hid my HS from everybody due to feeling so ashamed, my mum forgot I had it and I never told anyone either.

Now I've finally managed to speak out more than I ever have done and finally told my partner of 3 years that I had it and it has been a huge, huge relief not having to hide anymore and being able to have some form of support and not go through it all alone.

I have been referred to a dermatologist and will be going to my first appointment soon. So I really hope that treatment makes this easier to live with.

My heart goes out to everyone who has this and deals with the emotional and physical pain that HS causes.

I hope that the disease gets more attention and that the adequate research is done so that we can all understand and have more questions answered.

It's horrible to hear that you have a disease that has no cure and that you have to live with it for the rest of your life. But still, we will keep fighting, to please our bodies, to maintain peace and remain positive. Everyone battling this disease is a warrior!