I have a condition called HS (Hidradenitis Suppurativa). The disease attacks certain glands in my body.
When this happens, I develop cysts and lesions under the skin. These cysts and lesions can be as small as a pimple or as large as a grapefruit. They appear with no warning. I can have none today and wake up in the morning with one or several. They can occur almost anywhere on my body.
As if this is not humiliating enough, they can open and drain without warning. I have had this disease since I was a teenager, and will likely have it all of my life. I live with it, and inside it, every day.
It is not predictable, and no matter how hard I try, I do not know what it is going to do. The disease causes me chronic pain, chronic fatigue, and depression. The pain varies from a dull ache to outright debilitating pain which can last from a few hours to several days depending on the cyst or lesion.
The fatigue, like the pain, varies from near exhaustion to just needing to take a nap.
The depression is both physical, from the fatigue, and psychological, from not being able to do the things I like the most.
Depending upon the lesion or cyst, it may go away on its own, swell up and rupture, or may have to be surgically drained or removed or may just stay as it is. For me, “it is like a box of chocolates, ya never know what you’re gonna get.”
I do everything I can to manage and control the disease. Unfortunately, there is no known cause and there is no known cure. At this point all I can do is try and find different ways to manage it, hopefully keeping it under enough control that I can live something close to a normal life.
So while today I can seem “normal” and not have any problems, tomorrow may be a completely different story. While today I can walk, sit, stand, climb the steps, drive the car, tomorrow I may not be able to do any of these things without considerable pain.
In the latter stages of the disease, this is magnified a hundred fold.
You do not have to be afraid of me. The disease is not contagious and you can not get it by being around me, talking to me, shaking my hand or touching something I have touched, eaten or drank.
When I call and cancel something at the last minute, please do not be offended or take it personally. That is never the case. It simply means that once again the disease has tried to take control of my life. Please understand I am truly more disappointed and discouraged than you.
If I am at an event and have to leave early, it has nothing to do with my not wanting to be there . . . only that I have gone for as long as I can and I can not tolerate the pain, fatigue or discomfort. I am saddened, disappointed and discouraged to have to leave early, more than you know.
Today I can drive for hours; tomorrow, a trip to the bathroom can be a very difficult, painful challenge.
I can not explain in words the anger, disappointment, frustration and emotional pain this disease causes me. I can not adequately describe in words the hurt I felt the first time I could not make love to my spouse because of this disease. The despair I felt at not being able to hold my child when she needed comforting.
I can not tell you how humiliating it is to have lost a job because of this disease. To have peers not want to sit beside me, use my desk or computer because they were afraid they “might get it too.” Or have to explain to a manager or supervisor why I can not perform a certain task.
To go to a clothing store and not try on clothes because a lesion was draining or might open and drain while changing. Not being able to go to the swimming pool or the gym for the same reasons.
Please remember that I am me, I am not my disease. I still enjoy all the things in life that life has to give. I do my best to experience all of those things to their fullest. I love my family and friends, to laugh and play, to have a romantic dinner, to celebrate holidays and special occasions with as many as my house will hold.
Before this disease I could do all of this without a thought. Depending on the day, now I never know.
I depend on you – when this flares up. I like for you to visit me when I am too sick to go out. Sometimes I need you to help me with the simplest of things, with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the store. I appreciate your friendship and everything you do for me. You are my link to the normalcy of life. I love you with all my heart and I am so grateful for all that you do for me.
This is my life. This is HS.
Please also take a moment to read Louise’s other stories:
You asked what’s wrong…I will try and explain – Louise’s Hidradenitis Suppurativa Patient Story
Through My Eyes – Naomi’s Story – Daughter Of A Hidradenitis Suppurativa Patient
Through My Eyes As A Hidradenitis Suppurativa Warrior