What’s it really like being sick?
There is a barrier between you and most healthy people. Healthy people want healthy friends. They want friends they can regularly rely on. They want friends who’s lives are not regulated by pain, medication, exhaustion, sleep patterns, and doctors appointments. Very few people can see past these barriers to see the person you are.
They can’t see that you have a sense of humor because they see you when you are tired and hurting and they think that is you.
They can’t see that you love helping other people because you are so sick you can hardly take care of yourself.
They can’t see all the things you want to do with them and participate in, they can only see that you flake out a lot. So they stop inviting you.
They can’t see that you are strong and brave and every day you fight a battle just to meet your basic physical needs. They can’t see the effort it takes to just move your arm or put on your makeup or get outside the house. Your strength is invisible to them.
They can’t see how you long to be normal and to be a normal friend, all they see is that you periodically fade out of their lives for no discernible reason.
They have no idea what it is like to try and live a normal life when you are not normal. When everyone has expectations for you and you constantly fall short. When you are constantly being pressured to do something you physically can not do and treated with contempt when you inevitably fail.
They don’t get it.
So they drift away and move on because you can’t be a good friend and it hurts.
The truth about being sick is that you pretty much have to handle it yourself, alone, and it sucks. Even the most understanding healthy person can’t really understand what it’s like to live this life. They don’t understand what it’s like to be left behind again and again and again. It feels like shit.
It takes over your life and takes up all your energy. Some days your suffering is so intense you literally can’t see beyond it. Some days the pain becomes your whole world. Some days are better and you can pretend that life is normal.
Some days you feel joyful despite the pain, and some days you feel beaten down by it all.
Some days you feel like the person you were is dead and buried, some days you can see a glimpse of your old life.
Some days you accomplish your to do list, some days you wake up and know you’re spending the day in bed.
Some days you feel like everything is spiraling out of control, some days you feel like you’re managing.
Some days you are full of hope, and some days you despair.
This is life with chronic illness. It’s not beautiful or pleasant and often times it gets shoved in the background so no one feels uncomfortable. But you can’t shove us in the background. We exist and this is our life. It’s not easy, but it’s ours and we take ownership of it. For good or for ill it’s the hand that has been dealt to us and we’re playing it.
This is an update of an old post from a few years ago. You can find the original one here