Being real is scary. Being vulnerable is scary. Not being in control is scary, and guess what?! That’s what I’m about to do. That’s what this blog is all about anyways. It includes the messy and the unfiltered. This post may come across as poorly written, or whiny, so you have been warned.
I have several chronic invisible illnesses. If you’ve read some of the other posts on this blog, you already know that. Here’s a thought that I’ve been pondering though… Headaches are invisible, right? You can’t see someone’s headache, all they can do is describe to you how it feels and what they require in order to attempt to make it better. It’s no different than my pain. You can’t see it. All I can do is describe it and tell you what I need to make it better. So why then, when someone has a headache people say, “Aww, go lay down and take care of yourself.” or “I hope it goes away soon.” but when someone says they have fibromyalgia or another invisible illness the response is, “You should try getting some exercise.” or “I bet if you quit taking all those silly pills it would go away.” Just a thought.
Probably the #1 thing I struggle with concerning my chronic illnesses is this: I want desperately to be a normal 21 year old. I want to go out and get tacos with friends at 2 am, I want to go to dinner with other 20 year olds and look at the menu and order and eat and then hang out till late. I want to spend a whole day out and about without searching for the nearest water fountain or worrying about getting meal without gluten so I can take my medications. I want to get a $0.50 corn dog from sonic on discount day. I want to wake up extra early on a Saturday and just go get a coffee and a doughnut for breakfast and not worry about passing out or throwing up before I get my medications. I want to get through a day without an alarm sounding at 4:00 reminding me to take my medications. I’m tired of being afraid to eat things that I haven’t seen the label for, and I’m tired of offending or making others feel awkward when I ask or refuse to eat something. I’m tired of following my medicine and diet to the letter and still not being able to get out of bed. I’m tired of feeling every weather change, and being able to relate better to the elderly than to those that are my age. I’m tired of arguing with the pharmacy about medications, I’m tired of being looked at like a drug seeker, I’m tired of going to a new doctor and being treated like a liar and a faker. I’m tired of the closest doctor that treats my conditions being 4 hours away. I’m tired of the line “Wow, I just can’t believe there isn’t a closer doctor!”
Can I just blend in? Can I just not be the one that people have to accommodate? I don’t want to make other people’s lives harder. I don’t want others to feel awkward around me. I want to be normal and to be perceived as normal.
I don’t want those reading this to feel sorry for me, that’s not what I’m after here. I guess what I want to get across is this:
That person that always seems to sit alone or that person that seems to be a little different or not always super friendly…that person that is quiet and just observes everything…Maybe that person is struggling. Maybe that person wants normalcy more than anything! Maybe that person wants to be floating around the room socializing and hugging everyone. Maybe that person is dreaming of a time when they had the energy to greet everyone and make everyone feel like they matter. So perhaps before you rush here and there, maybe look around…maybe make eye contact and smile at the person who is sitting alone or who seems lonely. Remember that not everyone who is hurting has a wheelchair or a broken limb. Sometimes they look like everyone else. Be kind. Be considerate. Be loving.
I’ll include below some of my favorite invisible illness images. Take a moment and look through the slideshow. I think these sometimes help people understand more than anything. Remember, It’s not that I want your sympathy or your pity, I just want to help you understand.