If you have ever had any type of chronic or really obnoxious disease or illness, you know how frustrating it can be to not have a cure. There are all sorts of remedies and medicines that can ease your pain or your symptoms, but as of right now, there is no formal cure. That alone sucks. But one of the worst parts of having a chronic illness is that outsiders do not fully understand the circumstances and issues you deal with every day. And once they think they know what you deal with, they try to cure you with things that they have read about online. Sometimes it's hard to understand what someone with a chronic illness is going through, so here are some things that people with these kind of issues wish you could understand.
1. Just because someone you know has the illness, doesn't mean you are an expert.
You know the symptoms and the reasons, but you can't understand the pain.
2. I am not ignorant about my disease.
We have spent more time on the internet and in doctor's office than we would ever like to admit. Please don't assume we haven't looked up everything there is to know. Including...
3. Your Googled, WebMD home remedy will not help me and trust me, we've already tried everything.
One of the biggest pet peeves. After hearing about our issue for ten seconds, someone will try to diagnose it and tell us exactly how to cure it. But the issue is more extreme than the little symptom you've experienced once in your life. That's why ours is an actual, incurable disease. X-rays, CT scans, Ultra Sounds, and other tests are all things we have had to do. Your simple pill is not going to help us.
4. Just because you have experienced a small portion of our pain does not mean you can relate to it.
Having to deal with that pain for the rest of your life is something you will never understand.
5. Sometimes our illness can hold us back from doing things that we really enjoy.
It's not that we don't want to go do some of those things, it's that we genuinely can't. Feeling trapped in any situation can be scary for anyone with an illness. Anxiety can become a partner to our illness.
6. Sometimes the symptoms we deal with aren't always pretty.
It's not always fun and games. So please don't say "Ew" or we'll punch you.
7. When we say we are in pain, we mean it.
Because people can't relate to our pain, people turn to a "get over it" attitude. Or because our pain happens frequently, people get aggravated when we say we aren't feeling well. Our pain is not a joke or an excuse. It is real.
8. Sometimes we are limited by our pain.
My specific illness makes it difficult for me to eat different kinds of food. So if you ask me to go get tacos and fajitas with you for dinner, I'm probably going to say no. Or for a person with arthritis, they probably can't go rock climbing. Although we may love those things, it is important to understand that we can't always do them.
9. There are things about our future that scare us.
Is there a chance this illness is genetic and that my child will have it? Will it get worse as I get older? Will it change? How will it affect me in certain situations? The future can sometimes be a scary thing.
10. Some days are worse than others.
Sometimes our symptoms aren't quite as strong and other days they are completely horrifying. Our fun comes and goes.
11. Our illness will never define us.
Even though it can be hard to deal with these symptoms and struggles for the rest of our lives, we still want to live life to the fullest. It will slow us down sometimes, but we will always rise above it.
