Kids and Teens with Chronic Pain: You are understood.

Hello, I’m Victorya, and I’ve had fibromyalgia since I was a child.  Here’s my story:

I started ballet when I was three years old.  I was good at it, and I loved it more than I have ever loved anything else.  For nine years, I danced with all of my heart.  I got the amazing privilege to perform in The Nutcracker with the Moscow Ballet twice during that time, and I knew that’s what I wanted to do with my life.  When I was eleven, the pain started.  First in an ankle, then a shoulder, then random places at random times.  By the time I was twelve, it was so bad I could no longer dance.  I was beyond devastated.  I kept it together for my family.  I never let anyone in enough to know how much I was hurting emotionally.  A lot of people didn’t even know how much I was hurting physically.  Over the next four years, I would see many doctors.  Rheumatologists, allergists, a psychiatrist, and some random ones in between.  I prayed for healing for a few years, then I prayed for death for a few more.  I would wake up in the morning and cry over the fact that I had woken up at all.  Everything I had ever imagined myself doing was physically trying.  I didn’t even know what to do with my life.  I got about 5 different diagnoses, from juvenile rheumatory arthritis to general arthralgia, but one kept coming back up.  Fibromyalgia.  Most of the doctors I saw refused to put down an actual diagnosis on paper, because I was so young.  Apparently until you’re 18, unbearable pain all over everyday might just be growing pains, and something magical happens on your 18^th birthday deeming you diagnosable.  A lot of doctors suggested I would outgrow the pains, so I waited.  Nobody knew I was depressed.  I tried to talk about it to other kids from time to time, but I was told I had no right to feel like that, because I had two loving parents that didn’t beat me, and my family wasn’t poor. They didn’t understand what it’s like to live in pain, and I didn’t expect them to, so I kept it to myself.  I didn’t talk to my parents about it, because I didn’t want them to worry.  As much as I wanted to die, I would never kill myself.  I’ve always considered suicide a cowards way out.  I felt like I was constantly trying to prove my strength, to make up for the fact that I was in so much pain, so suicide was out of the question.  I heard cutting could help. I wanted to try it so bad, but everything I ever did, I was accused of doing for attention, and I knew that if anyone noticed I was cutting, it wouldn’t be “are you okay?” it would be “are you THAT desperate for attention?” and I couldn’t really handle that.  I started biting myself, which sounds stupid, but the marks don’t last more than a day so nobody noticed, and it made me feel a little better.  When I was fifteen, I had my wisdom teeth removed.  They gave me Vicodin.  I had never been giving narcotics before, so I got a little experimental, desperate to make the pain stop.  I was taking so much everyday for a couple of weeks that I couldn’t stand up for more than five minutes without puking.  It didn’t ease the pain, but it somehow made me feel better.  After a couple of weeks I realized I needed to stop, and I learned a thing or two about withdrawal.  I got older, grew up, got married, took a break from doctors, and finally decided to get back to finding an answer.  I saw a few more doctors, and it came back up.  Fibromyalgia.  I did all the research I could.  I tried so many prescription medicines, having already been through all of the over-the-counter stuff.  Nothing helped.  I tried pot, twice.  I don’t think it helped the pain, but it’s hard to say, because I have a terrible reaction to pot.  It makes me incredibly angry.  I didn’t know I was capable of being that angry.  It’s a really weird reaction, I know.  I’m almost 25 now. I manage to get through everyday.  I am always in pain, my idea of a really good day is about a 4 on the pain scale.  I’m not nearly as sad anymore. I don’t spend every day wishing to die.  I’ve accepted my life with fibro and figured out a plan for my life.  While it may not get better physically, it can get better emotionally.  You can learn how to live again and find a new purpose for yourself.  A lot of this, I’ve never told anyone.  For Fibromyalgia awareness day, everyone is listing symptoms to try and help others understand, but I want to help people understand what this does to us emotionally, particularly to children.  I felt so incredibly alone and isolated, knowing that nobody was going to understand, feeling unable to talk to anyone about it.  No child or teenager should have to feel like that.  Support Fibromyalgia awareness, let these kids know it’s okay to talk about it.  It’s okay to be incredibly sad, no matter how good everything else in your life is.  You are understood.