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The Darker Side of Chronic Pain We Don't Often Talk About

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September is chronic pain awareness month. Since everyone has had experience with pain in some way or another, I’m going to raise awareness about the lesser-know, darker side of chronic pain. What’s darker than being in agony 24/7? Mental illness.

I’m extremely open about my rare, chronic pain illnesses, multiple hereditary extostoses (MHE) and fibromyalgia, but the mental aspects and symptoms I have has always been something I kept close to my heart. All of the articles I’ve read by writers who also grew up with MHE, echo the same experience I had growing up.

I can’t always remember details much anymore, but one thing I can always remember is feeling alone. And when young, I was. Don’t get me wrong, my parents and my brother always supported me from day one. But besides them, there was no one else down here, and truthfully there were days where I felt like an alien compared to everyone, that this feeling even spilled over into including my family. I always just believed having tumors meant there was something just “wrong” with me, a mindset consistently reinforced by the constant torment until the most disfiguring tumors were removed before freshman year. Then, only the occasional “ew” if someone happened to pay enough attention to me for more than five seconds.

By the time I was in middle school I had such severe social anxiety that it was hard to talk to anyone. Group projects my worst nightmare. That “popcorn” reading game had me on the edge of my seat the entire class period. I always knew the answer but dreaded being called on, and having a cough almost always induced panic attacks at just the thought of having a coughing fit in class and people look at me. I fell in a deeper depression the summer before my freshman year, when the one friend I had stopped associating with me after seeing me in a wheelchair when I got home from my first tumor removal surgery. As a result of my low self-worth, I developed a pattern of falling into emotionally abusive relationships in high school, deepening my depression more and more each time (a pattern I finally broke this year).

I had what they call “high-functioning” depression. I graduated from high school with a 4.47 GPA, and a year later graduated with an associates degree while at the same time working two jobs, one of which included directing live television on the weekends. By the time I was 19, although I didn’t let my depression hold me back from thriving in the hectic atmosphere that is broadcast news, it just kept getting worse and worse. I was finally diagnosed with major depressive disorder (MDD).

I started treatment with both a therapist and a psychiatrist. Over the course of a year, one antidepressant snowballed into twelve different antidepressants and anti-anxiety pills a day, along with my other medications for chronic migraines, insomnia and stomach issues. Over the course of that same year, I developed anorexia as well. My lowest that I know of was 98 pounds, which made it much easier for tumors in my body to get stuck on nerves and muscles.

It didn’t matter what the reality really was. I still saw myself as that disgusting girl with the tumors.

I realized I couldn’t keep up just going through the motions anymore when I was told I had an osteosarcoma in my right ankle, a result of one of the osteochondromas from the MHE turning malignant. It turned out the tumor was not, and I read somewhere “change your thinking, change your world,” a concept my mom always preached. I realized I had to make a change. I stopped taking every form of anxiety and antidepressant medications I was on, and started the slow process of retraining my brain into finding the positive in the negative.

One of my highest achievements occurred the other day, when at the end of the session my therapist told me my primary diagnosis is no longer MDD but PTSD And I did it without any medication — something I’d love to tell my old psychiatrist who thought I couldn’t. I’m still amazed every single day at how beautiful some things in life are and I can’t believe I just let it pass by for so long. I’m amazed that I can just be alone with myself in peace, look at myself and not hurl insults at the mirror.

Marie hugging her dog
Marie and her dog.

Don’t get me wrong, there are still days where my MHE and fibromyalgia join forces and leave me so weak and in so much pain that I can barely move. However, on those days I just make sure I surround myself with my favorite things, like fresh flowers or candles, or pick out different colors in the sky, or give my puppy extra cuddles, or put extra graphics and effects into my shows. Focusing on the little things like that is the best antidepressant and painkiller I’ve ever had.

We can’t change what we were born with, but we can change the way we see it. If you have any form of chronic pain, I implore you to be easy on yourself. Staying on top of your mental health is one of the most important ways to treat your pain, and any chronic illness in general. Instead of feeling trapped because your body limits the scope of what you can do, be proud you can do the things you can do. Don’t be ashamed of how you feel. Talk. Over-communicate even. No one will understand or empathize if they don’t know what you’re going through, and you should never have to struggle alone in silence.

Living my entire life with a chronic illness has humbled me in ways I wish I could impart to the masses. Fully accepting every tumor in my body and every nerve on on fire has lifted a weight from my shoulders that, at this time two years ago, I didn’t think was possible. Surrounding myself with nothing but positivity has given my soul the peace I always yearned for. Although I may be in more physical pain now than I ever was, I’ve never felt better in my entire.

I strongly urge every single one of you to begin the slow process of retraining your brains into finding the positive in the negative. I may not know your struggle, but my heart goes out to every single one of you. I believe the world will be a better place once we learn to communicate with one another. The first step is opening up. Tell someone you love about your struggle; tell the world your story. Don’t be ashamed. If you feel like there’s no one who will understand you, tell me your story. Find me on Instagram (@maprilsyrup), and tell me the things you are too scared to say to anyone else. You’d be surprised how strong you truly are, if only you’d allow yourself to see it.

Originally published: September 13, 2016
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