Having something you never knew existed can be overwhelming. You Google it and all you see is minimal information with the same end result “There is no known cure.” The process of learning about an incurable disease can make you become overwhelmed. It can also force you into a dark spiral which causes more problems. Your stomach can sense your stress and can cause more pain. That glimmer of hope starts to fade and your thoughts get dark. Of course this is different for everyone but this is what happened to me.
I did more research than I ever did in school. I knew medical terminology that had my nurse friends impressed. I learned how to read blood test results and I learned to write all my questions down. But with every doctor’s visit I would come up short. No one at my local doctor’s offices could help me and they weren’t very good at making me feel better. The Cleveland Clinic did something different though.They didn’t give me a false sense of hope only to let me down. They gave me the truth. They educated me. They gave me statistics. They told me that even though they can’t get rid of it, they can help me have a better quality of life. They didn’t sugar coat it. They told me it’s going to take a lot of trial and error and we were going to have to work at it every day.
They put a stop to my downward spiral but it wasn’t enough to bring me back up into sunshine. I was having mental breakdowns—partially because I was starving and partially because I haven’t had good news in a really long time. I kept thinking, “I can’t be the only person in this ENTIRE world to be going through this!” I mean statistically speaking, out of over 7 billion people on this planet; I have to be able to reach someone going through something similar. The internet reaches so many people worldwide. I kept thinking on how I could reach someone. I took a break from Google and decided to check my twitter account. And then it hit me… Twitter reaches the world in a matter of seconds. So I stopped stressing for a minute and did something normal for the first time in 6 months… I tweeted a picture of my lunch. It consisted of Ritz crackers, Gatorade, and a popsicle with #Gastroparesis attached to it. To my surprise, someone reached out to me. This person had Gastroparesis too and told me about a Facebook group. I wasn’t alone!
Surprise and emotion gripped my heart. The more I explored in this group, the more I realized that hope can exist! They encouraged me to introduce myself and tell my story. In the past I would have had an issue sharing personal things to complete strangers. But in this moment, with these people, I was excited to get to know them. Most importantly, I was happy to let them get to know me. People had similar symptoms, similar tests done, and everyone had something that helped them find some sort of relief. I learned that relief comes in different forms— most need pain relief and have done many things to try and find this. Others need to be able to talk about things to someone that actually understands them. Being understood can seem like such a small thing to some, but at the same time can have such a big impact. Everyone benefits from something in some sort of way, simply by being connected and not being alone in this fight will bring back some sunshine.
Here are some links to helpful Facebook groups:
**I would like to thank @bundytr5 for being the person that reached out to me on Twitter. You had a very big impact on my life by just replying to an empty tweet from an empty stomach. #GPWarriors