Just like a robber, these lumps take everything you have until you feel you have nothing left. And just when you think HS has taken everything, it robs you of even more.
HS robbed me of the ability to make a living.
Data entry operators are required to sit for up to eight hours per day. Prolonged sitting is one of my HS triggers. My latest, worst flare-up, flared up quickly. Just as quickly, the pain prohibited me from working.
And not just a sit-down type of job. Oh, no, not this pain. This pain also interfered with walking and standing. The affected area is currently, overall, the size of a tennis ball. It feels like about five golf balls all jammed in there together. And that’s just the outer thigh. The inner thigh contains two more golf balls. When I walk and stand, they all work together to make it as painful as possible.
There are days I stay in bed, my leg propped up on a milk crate and dread those moments when I absolutely must go to the bathroom.
HS robbed me of social interaction.
I belonged to a writer’s group. I used to get together with a friend of mine for lunch. I used to love to walk around the lake where I lived and I would have conversations with interesting people. I rode MARTA to the library to pick up books. I looked forward to the coming of spring when I could increase my exercise regimen to include walking again.
I had to stop going to the writer’s group. I turned down invitations for lunch. No more visiting the library. And no walking around the lake.
I stayed inside so no one would see the pained expression on my face, or the telltale drainage on my clothing.
It got lonely.
HS robbed me of my self-esteem.
Mind you, my self-esteem never has been very high. I’m not the picture-perfect model; never have been. But I at least had enough confidence in myself to look people in the eye and know I was just as good as anyone else.
With HS, I am aware of the looks I receive when I “hobble” around in public. I’m constantly afraid the drainage will show on my clothing; I always wear black pants now. I’m also afraid of soiling furniture when I lie upon a sofa at a friend’s house.
And I am acutely aware of the facial expressions people have when I explain to them what HS is. I imagine the look is akin to looks once given to lepers.
Suddenly, I don’t feel as though I'm as good as anyone else.
HS robbed me of my strength and energy.
Constant pain aside, HS drained me of the desire to even cook a meal. I subsisted on cheese and crackers, salads, sandwiches – anything that was quick and easy to fix and even quicker and easier to clean up after.
Ironically, a side benefit was the loss of twenty pounds. And that was without even trying. But I wouldn’t recommend a dose of HS to lose weight. I would much rather have worked at weight loss with exercise. At least that would have felt better and been healthier, too.
HS robbed me of my health.
And not just my health, but also the opportunity to get quality health care with which to combat this illness. Without health insurance or a load of money, I cannot see those doctors who are knowledgeable about HS and treat their patients with compassion and dignity. Doctors who know I would be better equipped to deal with other situations once my distress and pain are alleviated.
Instead, I get to deal with doctors at “clinics” who hold my health hostage by demanding I conform to the patient they want me to be. Using the very words, “We won’t do surgery until . . .” I jump through whatever hoops they have in place. Not to mention that not once was my depression addressed or treated.
This was not the case when I had health insurance for two previous surgeries. Heck, those two surgeons could hardly wait to get in there and take those lumps away.
What I would give to win the lottery. (Have to buy a ticket first, though, gosh darn it).
HS robbed me of my independence.
I don’t drive long distances now – don’t drive at all if I don’t have to – because I have to prop my derriere off the seat, otherwise it is too painful to drive. I don’t feel comfortable or safe driving this way, but when the cat needs food or I need toilet paper, I have little choice.
If I need something, such as Goody’s headache powders to provide some relief for the pain, I often ask a friend to get some for me. In addition to the pain in my derriere, this also hurts my pride. I’m usually the one people ask for help, I’m not the one who should need it.
But the absolute worst, most vile, thing HS has robbed me of is the one thing that was the most difficult for me to earn:
HS robbed me of my freedom.
The freedom to be who I want to be, to come and go as I please, to do what I like to do.
I’ll spare you the boring details and explain it this way: I spent the majority of my life trying desperately to live up to the expectations others placed upon me. I was trained to do this from the age of three.
I never succeeded.
For the last twelve, blissful years, I didn’t have to do that. I was free and I would never have to live up to others’ expectations again. I no longer had to explain myself or check in with someone when I wanted to go somewhere. I didn’t have to cave in to guilt or pressures thrust upon me by anyone else. I could make my own decisions without running them by someone else or fearing disapproval.
I swore I would never go back.
HS heard me. And said, “Think again.”
Because after robbing me of my ability to support myself, my ability to interact socially and my independence, there was one last thing HS wanted: my freedom.
I fought tooth and nail. I clung to the tiniest shred of hope. I prayed, hoped and begged for a miracle. I foolishly believed a miracle was forthcoming.
But some things HS will NOT rob me of, are my dignity, my will to live and my desire to beat this, this stuff.
As far as I am concerned, HS is an unforgivable illness.
It may rob me, but it won’t defeat me. There will come a time when I will be able to rise up and reclaim all that is rightfully mine, all that I have been robbed of. And I can spit in the face of HS.
That is the day for which I live.
Pen is a self-published author of somewhere around 24 titles. Visit her website. Also check out her "Hope over Despair" merchandise.
To learn more about Hidradenitis Suppurativa visit these websites:
American Association of Dermatology