My name is Whitney Jory. I’m 26, and I happen to have a total of 11 disabilities, all of them chronic (meaning I will likely always have them). When I hear someone say to “feel better,” I want to remind them that this is how it is. Cervical dystonia is a neurological movement disorder that causes constant spasms in my neck, shoulders, back, throat, face and chest and a tremor throughout my body, and I have severe chronic pain syndrome. You better believe I’ve been doing everything in my power to get better since I was first diagnosed at age 18.
There are so many things even my closest loved ones don’t know about what it’s like for me to have cervical dystonia, chronic pain and all my other disabilities. I wish they knew how hard I have to fight every single day for my life. My chronic pain went severely under treated for six years. Because of those experiences and the culmination of both physical and emotional pain, there have been so many instances where I just wanted to disappear. I’m not ashamed to admit that I’ve called my fair share of suicide hotlines. I’m extremely thankful I’m an optimist and have so much strength because it helped me get through the darkest moments. When I start to think like this, I’m blessed enough to be able to call my extremely supportive boyfriend, John, at all hours of the night and talk it through. I’ve also made myself list 10 reasons why I love life in my journal. It makes me remember that my life is worth fighting for, even though I have to push against all odds.
I’m in severe and constant pain if I’m awake, even with medications. I’ve been through many sleepless nights where my pain prevented me from falling asleep or woke me up at all hours.
Social functions have become rather difficult. I’ve cried my way through many dinners in public simply because I didn’t feel good. I’ve been told by a friend that others get uncomfortable when I discuss my medical conditions. I wish I could talk about my health without making others feel uncomfortable.
I wish I had more support from my family, friends, my community, the public and the world. Most don’t even know what cervical dystonia is. My ultimate goal in life is to make “dystonia” a commonly understood word. I would love to see a cure for both dystonia and chronic pain.
Some things I wished my loved ones would do are surprise me with flowers or a card when I’m having a pain spike or recovering from a procedure. Chocolate is also a big comfort food; I’ve been known to polish off a bar or two on epic pain days. Friends could also show their support by coming over when I’m recovering, bringing Thai (pumpkin curry and brown rice, please) and watching TV shows with me. Even little things like loved ones sending texts of support, sharing my posts about dystonia on Facebook or even giving me a big hug (nope, I’m not breakable) when they see me could help. One huge thing loved ones could do is to help me organize a fundraiser to benefit the Dystonia Medical Research Foundation.
I wish my friends would make more time to understand what I’m going through. I’d like them to learn about cervical dystonia and other conditions, and ask me questions to try to understand how my conditions affect me. I want them to accommodate me into their busy schedules. So many of my loved ones make insensitive comments or are too busy to stop and listen.
Flowers, curry, cards, chocolate and texts are all nice, but having a person in my life to listen to me and understand even 1 percent of what I go through is invaluable.
If you or someone you know needs help, please visit the National Suicide Prevention Lifeline. You can also reach the Crisis Text Line by texting “START” to 741-741. Head here for a list of crisis centers around the world.
Follow this journey on Chronically Whitney.
September is Dystonia Awareness Month. To learn more about this neurological movement disorder, contact the Dystonia Medical Research Foundation. To sign the White House petition to have September formally recognized as Dystonia Awareness month, click here.