Being chronically ill is very hard to cope with. It is even harder when very few people around us truly understand. For those who are chronically ill, this is for you.
1. I’m okay is the biggest lie you will ever hear come from our mouths.
If we felt good, believe it you would know. We would be jumping for joy. Or more or less having a panic attack because to be honest, if I didn’t feel pain, I would think I was dead.
2. We shouldn’t have to prove to anyone that we are sick.
"But you don’t look sick" is flattering, but really we laugh to ourselves because on the inside we feel like we were hit by a bus. Or ten. It’s nice to not look sick but believe me, without the effort of getting ready (and laying down to rest between showers and blow drying your hair), you would definitely think different. But no matter how we feel we almost always get up, dress up, show up and never give up.
3. We learn not to chase people.
We know that we are here, and that we are important. Like everyone else we shouldn’t have to run after people to prove that we matter. However, when you are chronically ill it is hard to keep the people who don’t try to understand close, and that’s when you start to find out who your true friends are. For me, it took time to stand up for myself. Not caring what other people think is the best decision I could have made moving forward. If someone can’t take the time to understand you or listen, then they don’t deserve to be your friend; especially when you will bend over backwards for them. We often care too much about other people. Next time you find yourself going out of your way for someone who truly doesn’t understand, ask yourself if they would do the same things for you. The answer is probably not.
4. One of the hardest things about being chronically ill is the mental aspects that come with it.
The anxiety, The PTSD, the fear, the paranoia--it can all make you feel crazy on top of being sick. You are not crazy, you are human and you are doing the best you can. Do not be ashamed of yourself to take time for you, to have a bad day, or to even need medication. We have been through a lot more than the average person, and you have every right to feel the way you do.
5. It is hard to explain to other people that just because we do things doesn’t mean we are better or have experienced a revival.
It simply means we had a decent day. What comes with leaving the house and getting out is much different than someone who is living a normal life. Getting ready exhausts us, we can barely wake up, the anxiety that comes with leaving, or the medicine regimens we take before we leave, none of it is easy. We fake it till we make it.
6. We cannot stand to hear people complaining about their job or school.
Most of us would give our right arm to be doing that. Staying home from school is not fun, I feel like a stay at home mom at the age of 21 without the being a mom part, and with barely any money. So next time you think about complaining about living a normal life think to yourself, what if that was all taken away? What if every day was consumed with living in chronic pain. Then you would realize to never take a day for granted.
7. We take things out on those that we love.
Talking about something you live and go through daily isn’t easy to talk about, your life is already consumed with the idea of being “sick”. Often times we keep too much in so we don’t feel like a nuisance, or so we don’t make our loved ones upset or scared. Bottling up these emotions sometimes can make us a little on edge. We get agitated and moody, we don’t mean it; we are doing the best we can and we love you for loving us anyways!
8. It is hard to except that you are incapable of being independent.
I don’t like asking my parents for money because I cant hold a full time job; and it is extremely hard to watch them dish out money on your health bills. We don’t like the days we are so sick that our moms are our nurses, and make us food and keep us hydrated. It is an awful feeling to need your Dad to carry you up the stairs when you are too weak to walk at 16 and 21 years old. We feel bad when our parents or a loved one has to drop everything to take us to the hospital. Unfortunately, when you are chronically ill you have to accept that being independent can wait until you are better.
9. We can’t do what everyone else does.
That is hard for most chronically ill patients to accept. We so badly want to live a normal life, and to live for what we have missed out on. Sometimes it is hard to make the right choice, but we eventually learn that sometimes saying no is the best thing we can do for our health. Stay up all night? Not a chance. When I had to pull an all-nighter for finals, I wasn’t just tired the next day. Everything hurt and I thought I was dying. Sleep is so important. Many of us cannot eat a normal diet and therefore cannot eat whatever we want. Go out every night of the weekend? Do remember I am a 21 year old in a 100 year olds body. We need our rest, even after just running errands for a couple hours or exercising. The smallest things exhaust us, and that is never fun.
10. We do not give up easily.
We have come so far. We continue to seek help, go to our countless doctor's appointments, receive our treatments; whatever it takes. Every day is a battle, and the end of every day is an accomplishment. We got through the day, no matter how bad it was we live for our good days. Staying positive is not easy, but we learn to do the best we can.
I recently came across the quote “In a world where you can be anything, be kind." Those words are so powerful. Kindness and understanding from people around us is what gives us the motivation to pull through, so please don’t ever forget that. Just being kind you are changing a frown to a smile, making someone’s day; or changing their life. Don’t think about it, Just do it. You will find yourself happier too.
Much Love & Stay Strong,
Tori Ashdown xoxo