How celiac disease, vestibular neuritis, and cervical dystonia have ruined my answer to the most common way to greet people in America.
“Hello, how are you?”
Is it okay to say I HATE that sentence? Because I really, really hate that sentence. I work in a school and cross paths with dozens of coworkers every day. They smile and they ask me how I am. I used to ask them the same question because it’s a normal part of daily conversations. It used to be easy for me to answer:
They all used to be true. But none of these things are true for me anymore.
- In 2005, I was diagnosed with celiac disease. It was tough, but I was still “good”.
- In 2008, I was diagnosed with vestibular neuritis and I was still “fine”.
- In 2009, I was diagnosed with cervical dystonia. But then, I was not “good” or “fine”.
The truth was I was in pain, I was dizzy, I had migraines, I was sick, I was frustrated, I was confused and I was completely and utterly depressed. In the span of 5 years, my life was turned upside down. Any one of these diagnoses could be devastating. Try three.
If you were me, what would you have done? What would you say? If you are living with a rare disease leave a comment below, let’s talk about it.
I am a relatively private person and I never wanted to be the center of attention. But mostly, I never wanted pity. So, I lived in silence for many years. While I told my friends and family about my diagnoses, I didn’t tell even my closest friends how I was actually doing. I hid it from them for nearly eight years. I thought living this lie was preferable to being “that person”. You know, the person who always complains about something? The person whose bleak attitude drives everyone away? That’s honestly how I viewed myself.
Now here I am sharing my story with the world, so what changed? Honestly, I got tired of being the victim. Now let me be clear, I was the one who saw myself as the victim. I was the one who saw myself as “that person” and I assumed that that was how everyone else would view me. When I finally shared the extent of my symptoms, my friends were shocked. I know some of them felt betrayed, especially because I went so many years without telling them the whole truth. And that’s all on me. If I could go back in time I would’t have allowed myself to be the victim. I wouldn’t have played the “why me?” game or thrown myself a mega pity party. At least not for eight years.
The person I was then, is not the person I am now.
Sure, I still struggle to find a balance between doing what I want and living inside a body that disagrees with my wants on a daily basis. But I no longer see myself as a victim. I am a fighter and I am so much stronger than I ever thought I could be. Eleven years after my first diagnosis you can ask me how I’m doing and I will tell you the truth, “I’m doing ok.” The truth is God has been good to me: I’m alive and healthy, have countless blessings in my life, a great support system, and I am still able to work full time. But I am always in pain. Every single day. That’s probably not going to change. While I can’t control my body, I can choose to fight and stay strong.
Through this journey, I have come to find out there are so many people like me. People who live their lives with varying degrees of pain every single day. I never realized how many others there were like me. My heart goes out to every one of them. And some of them, well, they will tell you they are going “Great!” like I used to, even though they are not.
Click here to read Amber’s 15 Things I Want People to Know About My Crazy, Wonderful Dystonia Life.
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If you were Amber, what would you have done? What would you say? If you are living with a rare disease leave a comment below, let’s talk about it.