I have Hidradenitis Suppurativa Part 2

If you haven't read Part 1, here is a link to my first post about HS that explains what it is: I have Hidradenitis Suppurativa Part 1

The Poem I wrote about living with HS can be found here: Having HS: A Poem

I have meant to make this a series and keep writing regular posts but as often happens with HS, what I mean to do isn't always what gets done.  I am going to try to keep up on it better though.  I have found that reading other people's stories with HS has helped me a great deal and maybe someone will stumble across my HS series and it will help them too.

It's interesting how something can make you want to hide and at the same time make you want to wear a big sign on your forehead explaining everything at the same time.  What I mean by that is that a lot of times I want to hide-I want to hide away from the world-I want to hide my bumps-I want to hide my scars.  Then there are other times when I get asked questions like "Is everything ok?" "Why do you look so down in the dumps?" "Why didn't you come to the party/get together/etc?" "Have you done *insert just about anything* yet?" that I wish I had a sign taped to my forehead explaining, yes explaining NOT excusing, exactly "WHY".

As I mentioned earlier reading other people's HS stories has helped me a great deal. It helps to see other people feeling the same things I feel and it also helps to see them triumphing and falling and then getting back up to do it all over again.  Some people living with HS are much braver than I am.  With it being summer time that's the time for tank tops, sleeveless summer dresses, trips to the pool.  I love all of those things.  I have tank tops, pretty dresses, and I love swimming.  I remember when it was easy to just throw on a tank top or swim suit and only be self conscious about my weight-and as a side note, how lovely would it be if HS contributed to myself esteem rising as much as my weight has haha.  Unfortunately, while I do enjoy cute sleeveless outfits, because of my HS (or my lack of confidence with my HS I should say) I have a myriad of "top shirts" as my son Riley calls them, to go with my outfits.  It kind of defeats the purpose of a sleeveless outfit.  There have been many times that I feel out of place because I am so hot that I can't help but to say aloud "it's so hot!" and I'm sure people look at me and think.."well, why doesn't she take off that heavy top layer?"  You know what-I should, but I'm just not there yet.

Though sometimes I want to hide, other times I wish I could tape a sign on my forehead explaining everything.  Sometimes I want to shout things from the rooftop.  Things like: I'm not constantly in a bad mood for no reason, in fact most of the time I'm actually not in a bad mood at all, I just hurt. Maybe I'm not being as social as everyone else but that's because it hurts to move in certain ways. Maybe I am commenting on how hot it is, not because I want to complain but because while everyone else is wearing tank tops, I have to wear a shirt on top to cover my bumps and scars (because if I didn't that would open up a million more questions that I don't always feel like answering) or because I know that the heat only means more issues with my HS. Maybe I am unable to attend social gatherings, your party, or something else you have invited me to..that doesn't mean I don't want to, but sometimes I can only do so much (If you ever get the chance check out The Spoon Theory by Christine Miserandino, she explains this point perfectly: The Spoon Theory). If I do spend the time and energy to make something for you, go somewhere with you, reach out to you, it's not because I'm bored or have nothing better to do, it's a conscious decision on my part because I really want to, because making you that gift or going out to lunch is not always an easy thing when you are in pain 24/7.  I have always been a sensitive person so this has nothing to do with HS, but when I do reach out and you don't reach back, it hurts..a lot.  Though I know I am not easy to be around for a million reasons..it still hurts.  When I fail to do things with people or participate the way I want to, it hurts..a lot.  I never want to hurt anyone or not be there for someone and I know I have.   There is a reason why depression is so prevalent in the HS community, I won't go into all that here as I discussed it in my I have HS part 1 blog entry.

HS is NOT an excuse and I never intend to use it as one.  That is why I'm writing this post, not to give excuses but to explain, to give a voice to all those things I want to scream when someone makes a rude comment to me or gives me a look.  I wanted to write this because I find it interesting that something can make you want to hide and scream from the rooftops for all to hear-at the same time.  It's an interesting feeling to not want anyone to know and yet feel compelled to give it a voice at the same time.  I want so much to give a real voice to HS-the struggles, triumphs, breakthroughs and breakdowns..all of it.  Who knows what today is going to bring but I've been through quite a bit lately so I feel a triumph coming my way...