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...

Having HS, a poem by me

Open holes
Open heart
Trying to learn to embrace these scars

See what you want to see
Or see what I see
See what can't always be seen with your eyes
But what is my reality

Up and down
Inside and out
A literal "bumpy path"
A little compassion and understanding
Is that too much to ask

I smile
I cry
I scream
I laugh
But when we do these things together
The pain is cut in half

Sometimes I feel embarrassed
Sometimes I feel alone
Sometimes I have to remind myself
You just have to keep moving on

Giving in to all the "I can't"s
Would be surrendering to this war
Though my body fights against itself
This life holds so much more

It holds much more than pain
It holds much more than fear
It holds the joy of all the things
That HS will never make disappear

It cannot take away that which I am not willing to give
The thing about living with HS is that you have to remember to LIVE

Love those you love
Create something new
Don't let this pain take away the best parts of you

I am thankful for every single day
Whether it be good or bad
Because HS doesn't make or break me
It is just something that I have

~Kate Fallecker

I have Hidradenitis Suppurativa

June 10-16 was Hidradenitis Suppurativa Awareness week in the UK.  There is no official awareness week for HS in the United States but many people who suffer with HS often use this week to spread awareness here in the United States as well as come out as a survivor to friends, family, and people in their community.  I wasn't ready to talk about it then, and maybe I'm still not exactly ready to talk about it now, but I think it might help me to talk about it.  

Hidradenitis Suppurativa (referred to from here on as HS) is defined as "a skin disease that most commonly affects areas bearing apocrine sweat glands or sebaceous glands, such as the underarms, under the breasts, inner thighs, groin and buttocks.^[1]

The non-contagious disease manifests as clusters of chronic abscesses, epidermoid cysts, sebaceous cysts, pilonidal cyst or multilocalised infections, which can be as large as baseballs or as small as a pea. Hidradenitis Suppurativa pain and depression can be difficult to manage.^[3]" (credit wikipedia) 

There can be many complications with HS that can be pretty frightening when you read about them.  One of my fears is the infection entering my bloodstream.  Some other complications (aside from the pea to baseball sized lumps) include open wounds that do not heal, tunneling under the skin, scars, etc.  

HS is considered a rare disease and because of that not much research into the disease has been done.  It is said to affect between 1-4% of the population (credit HS Institute).  

People who suffer from HS often experience and battle with depression, debilitating pain, social isolation, limited mobility, and anxiety.  

There is no cure for HS and the cause is unknown.  Though some people do go through periods of remission often times HS tends to get worse over time.  HS uses the   Hurley Grading System to differentiate between the 3 stages of HS.  (credit HS Institute)

Now that you know a little about HS, I'd like to tell you how it affects me.  Currently I am in late stage 2/early stage 3.  I don't know how things will develop as time goes on and am scared because of the things I have read saying that for a lot of people HS gets more severe over time.  Mine has progressed for sure.  I went without a diagnosis until by chance I changed doctors.  My regular doctor was off that day and I had to see the other doctor in the office.  That doctor lanced my arm and put a tube inside.  That day I decided to change to this doctor because he was a lot more understanding than my previous one.  It wasn't until my follow up appointment that he diagnosed me with HS.  It was good to have a name to what I had been suffering with but scary as I immediately went to google and read things I don't think I was ready to read.  

With HS being so unknown to many people, suffering with HS often makes me feel very isolated, misunderstood, lonely, anxious, and ashamed.  I am fortunate that as of right now my HS is mainly invisible to most people as I am able to cover it with clothing.  I hurt for those who have HS all over their bodies in places that you can't hide, I don't know if I will ever have that (and all I can do is hope) but I hurt for those that are dealing with that right now.  Of course people may think it strange that I wear a "top shirt" (as my son Riley says) over tank tops or dresses-it has been my way to cover myself.  Infact, I wore a tank top out in public for the first time in I don't know how long just this past weekend.  I was self conscious the entire time but I did it to try and ease myself into it as we weren't near home so no one knew me where we were.  I am in some kind of pain 24 hours a day, 7 days a week.  That pain can range from irritating to pain so severe that I can't move my arms or legs without extreme pain-and some times not at all.  I live with this every day of my life and I fight through it every day of my life.  

I am a mother to two wonderful boys and a wife to my best friend in the world.  I do NOT let my HS get in the way of doing things with my children, having fun with them, going places with them.  I am very involved in their school and sports.  Though it gets hard at times I am so thankful to have such a wonderful husband that has helped me with my HS so much.  I can't even begin to write how much I love him for all he has done.  I know it can't be easy to live as a spouse to someone with HS.  He often hears me cry in pain, say "don't touch me here", or "I can't bend over right now-can you pick that up?" "I can't lift my arm-can you reach that?" He has cleaned my wounds, bandaged me up, held hot washcloths for me, carried things when I couldn't, reached things when I couldn't, taken breaks with me when it hurts to walk.  Not only that but he has never ONCE made me feel anything less than the most beautiful woman he has ever seen, even with my open wounds, bumps, and scars.  Not to mention that he does all of this while living with Epilepsy.  I think in a way that his Epilepsy and my HS has brought us closer together because we've had to care for each other in a way that is very personal.  My kids know about my HS and have been so great about it.  I don't know how I got so fortunate to have this family.  

What I wish that people would understand about my HS is that it is not contagious, it is not caused by bad hygiene, it hurts every day. To expand from a graphic someone made in one of my support communities:  I wish that people would understand that when I say I am tired, or I need a break, or I need to rest it is NOT because I am lazy.  When I am sad, or stressed, or full of anxiety it is NOT because I feel sorry for myself.  When I don't come to your party or want to hang out it is NOT because I don't like you.  All of these things are because I have a disease called HS and it rules my body-and while it may rule my body I do NOT let it rule my heart or my life because I may have HS but HS doesn't have me.