I am a very laid back and easygoing person, so the number of things that make me truly mad is very small. Nevertheless, there are certain things that should never be said to me or any individual dealing with a chronic illness. "But there are people that have it worse than you." "At least it's not disease X, Y, or Z." "You should be more thankful." "At least it is not immediately life-threatening." “Have you tried this treatment?”
Every time I hear comments such as the ones above, every muscle in my body clenches in pure anger. Some are well intentioned, but others are seriously misguided. Illness is not a contest and comparing illnesses not fair or right, especially because everyone is different. Everyone has different symptoms. Everyone presents differently and everyone has a different pain tolerance. Many things in life are subjective and some parts of illness are no different.
Illness, no matter how serious, is a challenging part of living life for anyone. Take it from me, a veteran of 24 hospital admissions in less than three years, countless trips to the operating room, and daily micromanager of my illnesses. Each day is carefully planned starting when I open my eyes. Before I even move, I have to do a full body “systems check” to see how I am doing and how much I’ll be able to do that day. If I overdo it, I will be paying for it for days and if I don’t do enough, I end up being stressed from feeling behind. How I feel today is not going to determine how I feel tomorrow or next week. I know that this is a difficult concept for the average person to understand.
Just because someone else's symptoms may not be as severe as my own, doesn't mean that I'm going to treat them any less. In fact, I would prefer to capitalize on the similarities between our illnesses, create a new friendship, and find unique ways to support one another. One simple text, letter, or Facebook message can go a long way when someone is having a rough day. Hear about a condition you have never heard of before? Educate yourself! For most people. Google is easily accessed for most people and I know that I really appreciate it when someone has taken five minutes to educate themselves on my conditions.
It is time to stop comparing illnesses, the severity of illnesses, whether or not a disease is life-threatening, etc. and join together to find efficient treatments or even cures for all of these conditions. Sitting around exchanging petty comments isn't creating the change we want to see in the world. So let's use all of this negative energy to allow the chronic illness community to unite to find treatments and cures for ALL diseases, so that one day, no one has to suffer and extended hospitalizations are a thing of the past.
I am a 20 year old junior at the college of my dreams. I am studying Emergency Medicine and Communication Rhetoric and minoring in the Administration of Justice and National Preparedness and Emergency Management certificate. At some point, I want to go and get my paramedic certification when my health allows. I have several chronic illnesses and this blog and website serves as a place for me to share my journey fighting CRPS and my other conditions. I hope that this blog can also serve as an outlet for raising awareness for rare diseases. Thanks for reading and I hope you enjoy! Feel free to comment; I'd love to know what you think!