I was born with a chronic pain bone disorder called Multiple Hereditary Exostoses (MHE). I always struggle to explain this disorder in just a few short sentences. It seems so hard to condense everything I feel on a day to day basis, everything that I’ve been through because of this disorder, into just a few sentences. Basically, I have a genetic mutation that causes my body to produce “extra bones”, only they aren’t actually “extra” bones. They’re more like bone growths. People who have MHE call them bone tumours, growths, or spurs. I have these bone growths all over my body from the collarbone down. I have had 14 surgeries to remove the bone growths that were causing problems. When they get too big, they can cut off nerves and tendons and cause muscle damage.
Okay, so I have this bone disorder, and it alone makes my life a little tougher than average because I can’t walk very well or stand very long, and I’m not very strong. I’m also in a lot of pain each day.
I don’t know if you know this, but being in constant pain is depressing. Picture a heavy weight constantly pushing you down, and no matter how hard you struggle against it, it successfully keeps you down.
When I was a kid, I was pretty damn happy. Sure, I got sad when I couldn’t do the same things my sisters’ could, or when I had to go in for yet another surgery, but I was pretty happy regardless. As I aged, though…my anxiety and depression grew with me. I started covering up my awkwardly shaped legs and arms with layers of clothes. I started drawing into myself, keeping my pain and my disorder a secret from my peers. I didn’t want to be known as “that girl with the weird bone thing”, although I was. Being in crowds had always made me nervous, but it started to make me downright anxious.
In 2009, when I was 19 years old, I became a mom for the first time. I loved my new role, but my anxiety and depression rose even higher. It grew every single here from then to now. Now that I am a mom of two gorgeous boys and married, my depression and anxiety are incredibly high. I “have it all”…beautiful children, a roof over our heads, and a husband who loves me…but I still struggle daily with my chronic pain, depression and anxiety. In November of 2012, I actually went to my family doctor. I could no longer handle “living this way”, and I wanted a solution. It’s now April of 2014, and I haven’t yet been able to get an appointment with a psychologist. I have tried two different kinds of medication, but I’ll confess…medication doesn’t seem to be for me. It makes me even more tired than I already am, and I become unable to function because I am just so tired. With the exhaustion that chronic pain brings, you really don’t want to add any extras in.
I have a theory. My depression and anxiety are so high because they grow every time my pain does, and my pain seems to grow every year. Pregnancies seemed to fast track my MHE issues, and my pain got worse each time too. Heavier. Now that I’m a mom, I can’t take “rest days” or cater to my body as I used to. I now am up as soon as my kids are up, doing things to get us ready for our day, trying to keep house and make it to bedtime without collapsing. Most days, I struggle terribly with this. My patience takes a hit and all I want to do is cry because I have no patience and the chronic pain hurts. They don’t call it chronic pain for no reason, it’s always there. Some days, it’s more bearable, but most often…I make it to the end of the day by sheer determination.
I also deal with monstrous feelings of guilt, both of our sons’ inherited my MHE. Just knowing what I went through is enough to twist my guts in anxiety for them. I am able to relax myself by keeping proactive with them with their specialist appointment.
So, how do I deal with my chronic pain, depression, and anxiety? I force myself to push forward. When I don’t want to get out of bed, I force myself. When I don’t want to do certain things because I’m feeling so terrible, I do them. When a situation makes me anxious, I force myself to do it. I take every day just a day at a time, and I try to be as kind to myself as I can be. I talk to those who understand how heavy mental illness can be.
I remember that I am not alone, and neither are you.
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Chronic Pain and Depression
Woohoo! Honored to have been given a chance to write for the Stigma Fighters series.
So honored that you wrote for it. WORD! Amazing story.