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.