For as long as I can remember, I’ve been in pain.
I was born with a bone disorder called Mulitple Hereditary Exostoses. Nobody in my family had it; I was a rare case where it wasn’t hereditary for me, but a genetic mutational. I was a fairly happy kid, I guess. I tried to smile through the pain, and I only started to get sad when I started to realize the differences between me and everyone else.
MHE is incredibly hard for me to explain in just a few short sentences. I basically have bone tumors that grow along the long bones and joints of my regular bones. As a child, my doctor referred to them as “bumpy bones” or “extra bones”.
These bone spurs (growths, tumors, extra bones or whatever you want to call them) cause a lot of pain on a daily basis. They rub up against tendons and nerves. They fuse my joints and they affect my mobility. I’ve had around 15 MHE related surgeries in my lifetime. The doctors go in, shave down the bone growths, and stitch me back up. I have several ugly, angry scars all over my limbs and I was extremely embarrassed of them as a teen.
I hid my body. I wore layers and tried not to draw any attention to myself what-so-ever. I hated when people looked at me. I developed extreme anxiety when it came to social situations and crowds, to the point of getting physically ill.
Each year, my anxiety got worse. My self-hatred grew. I never thought I was beautiful, I never thought I could be desired or considered sexy. Maybe it had something to do with being told that “my bone thing was gross” on more than one occasion, by more than one boy, after revealing bits of myself to them. Maybe it’s just extremely hard to be different from your peers. I reached a point where I thought I’d never find love or happiness.
Then I met my husband, and I started to see myself through his eyes. I started to see that my scars and differently shaped limbs didn’t take away from my beauty, but added to it. I was unique, a rarity. Sure, some days I absolutely do not feel that way, but those days are less frequent then they once were.
I used to hate my body so much. Now I only hate that it doesn’t work the way I need it to; the way I want it to.
It also seems like “managing the pain” of this disorder is a catch 22…damned if you do, damned if you don’t.
For example; I used to draw. I used to love drawing, and I used to be fairly decent at it. Toss in a couple of wrist surgeries followed by the bones in my fingers slowly fusing, and that ability is now gone. Each surgery comes with a price; the loss of my drawing ability, nerve damage. Scars that hurt.
Last February, I had a bone growth removed from the heel of my foot. For years, I felt as if I was walking on a marble. The sensation is all messed up in that heel, and it still aches. Luckily, the sensation of “walking on a marble” is gone, though. A price to pay, sometimes the benefits outweigh the risks…and sometimes, they don’t.
Accompanying all this pain is depression. You can’t be in pain every day of your life and not feel depressed by it, or at least…I’ve never met anyone who’s escaped the demon of depression while coping with chronic pain. It’s depressing to tell your children that no, you can’t get on the ground with them today to build a Lego Spaceship because you’re in too much pain. It’s depressing to have to say no to doing fun activities with your friends because you simply don’t have enough energy to do it all. Being in pain sucks your energy back like my Dodge Ram sucks back gasoline; it’s there one minute, and gone the next. Unfortunately, I can’t just go and refuel with the ease of filling a truck.
I also live with a monstrous amount of guilt over the fact that both of our sons inherited MHE from me.
The pain, the anxiety, and the depression all seem to grow more and more with each passing year, especially after my pregnancies. It’s a ripple affect; the pain intensified, I have more responsibilities and I can’t just “rest” when I have a bad pain day. I have to keep moving. This spirals my mental symptoms out of control.
I take no medicine for depression or anxiety, but I do take a synthetic marijuana pill to help manage pain. It works to help elevate some of the depression and anxiety as well. I mostly force myself to keep moving, to keep going even when I absolutely do not want to.
There’s one thing I am determined to teach my kids: and that’s the art of never giving up.
Jess is a married mother of two in her mid-twenties. Jess is addicted to coffee, Instagram selfies, Cadbury Mini Eggs, and Dill Pickle chips (only not together, because that would be gross). She has been blogging for nearly 10 years, and won a Bloggie award some time ago. She writes new adult romance novels under the pen name of J.C. Hannigan. You can find Jess pretty much everywhere; except, it would seem…in the laundry room.
Author Page: http://facebook.com/jcahannigan