Have Your Say

Every month we will be featuring a story based on the views and experiences of a HS sufferer. If you would like to tell the world how HS has affected your life, then send us your story to mystory@ba-hs.org.uk. Stories from previous months can be viewed using the links below this months story. (Unfortunetly we cannot guarantee that every story will be published. Stories will be published as received.)

This Month - Chris tells of his experiences with HS.

I've had this disease for about 20 years now. Nobody has ever taken it seriously, or looked at it as being anything other than "just a boil". And as you all know, it is far more debilitating and humiliating than that.

The times I've been to see doctors and had to forget any ideas of self respect as I've laid there having someone inspect my genitals or other places even worse than that, well I've lost count.

The times, and length of instances where this disease has destroyed my sex life, where it has made working at best painful, and at worst impossible are innumerable.

And do you know that the worst part of it is the lack of understanding, or the lack of knowledge about the disease. Not only from the medical profession, but by those around you. Nobody seems to understand what life is like living with Hidradenitis Suppurativa. Hopefully this Association, it's supporters and fellow sufferers will change all that in time.

I have what I gather are quite normal manifestations of HS. Abscesses on or next to my testicles, even on my penis once. The pain was indescribable. And as for those occasions when I get an abscess between my butt cheeks. How can I cope with showing that to people?

Apart from my last and long overdue appointment with a wonderful female consultant dermatologist, my experiences at my local hospital have been nothing short of disappointing, and my last session as an in-patient ended with me discharging myself as the lack of understanding, knowledge, compassion, respect for my privacy etc was abysmal.

Now I have found someone who cares. Someone who is experienced. And with her help and intervention, I just hope that my life can get back to some kind of normality.

HS is an awful and debilitating disease. Let us all work towards raising awareness to the medical profession and public alike, and then, perhaps, we will get the care and attention we need.

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