Living with Hope - Hidradenitis Suppurativa

I guess I can start with an introduction first. And then my reasons for doing this blog. The answer to both of those questions are, at the same time, intrinsically simple and infinitely complicated.

How to do this? Perhaps I'll just layout all the things that people are so often judged on - even if only subconsciously.

I am a white, female. I have dark hair, fair skin, and green eyes. I'm, like a good majority of Americans, overweight.

My name is Angela.

What might not be so easily viewed and taken into account is who I actually am. I'm a deeply caring, loving person. I am extremely emphatic and have deep wells of compassion for people, animals and the earth herself. I am always questioning and love to learn; anything and everything. I've often been described by friends as both a haven - someone they can always rely on to be a safe place to be, and a geek.

My name is Angela.

Most likely if you've found this blog it's because you've heard of Hidradenitis Suppurativa. And you can probably guess that I have it. It's been a big secret for the entire time I've had it. There aren't many people that know I have it. Not family, not many of my friends. It's my last great secret. I have Hidradenitis Suppurativa.

My name is Angela.

I keep repeating myself because the biggest reason I'm doing this blog is I feel that those that suffer this debilitating disease, in silence, alongside me need a voice. I'm doing this to educate those that haven't been idagnosed, people that have never heard of it, and anyone that I can tell. That's part of the reason.

After more than 11 years with this disease. After all of my trials, continued searching for relief, if not a cure, it's finally time for me to stop hoping someone else will speak up and do something. It's time I did.

So I'm putting aside my natural shyness. Ignoring the voice yelling at me to shut up and not tell the world this about myself. Blocking out the whispering pleas to not broadcast this very private pain of mine. And I'm talking.

I'm not here to replace the fantastic organizations and support groups that are out there (which you can find in the links section). They're doing great work. I've found a lot of information on them. They work to get us noticed. To make us not so silent. I just want to add to that.

I want to put a more personal face to the disease that many can't talk about themselves.

I hope to be an easy place to come to. I hope to help one other person that feels alone out there. I hope to share the information that I've spent years searching for, in an easy to find manner. There's certainly a lot of it. I hope to help ease the pain of learning about HS, as we certainly have enough to deal with.

In the end I truly hope to push for research for a cure.

I hope.

Two simple words. And I struggle to hold onto them sometimes. Frequently in fact. But I hope.

So, welcome. Nice to meet you.

My name is Angela.