I was asked recently what it feels like to have sarcoidosis. The only word that came to mind and the one that popped out of my mouth was…”messy”. Living with a chronic health condition like sarcoidosis is untidy. Your body is so out of your own control. Your mind will be all excited to do something and you’re so happy and then your body slams on the breaks. Nope. This new fun thing you were going to go do, it’s not going to happen. All your energy is suddenly drained, all your strength gone. You cannot breath. Your pain is through the roof.
Generally you try to smile and fake your way through it. Most of the time you can and others are none the wiser but, sometimes having sarcoidosis just stops you dead in your tracks. You cannot always do what you want to do. You have to learn to say “no.” And, saying “no” to friends and family really sucks. Saying “no” to adventure and travel is not fun!
This disease is often invisible too, making it that much harder for other people to truly understand how you feel. Physically you can look like the picture of health but just below the surface of your skin a battle rages. Nerves feel raw. Air will not find its way into your lungs. Bones and joints silently scream in agony. So when you tell people that you can’t do something, they don’t always believe you and this is messy. Relationships get messed up when there is a lack of understanding. Plain and simple.
Having chronic issues from my sarcoidosis is messy on a lot of levels. It hurts my body. It slows me down. It ended my career. It impacts my ability and desire to be social. Its unpredictable nature looms over every part of my day, hour by hour. I can feel fine when I wake up but within a matter of hours, all of my plans for the day are shot. My body decides to disagree with the rest of me. Messy. Messy. Messy.
It’s not just messy for me either. It’s messy for my family. My spouse is now the sole financial provider for our home. He never complains but I know there is pressure on him and this is unfair. We can’t travel as much as we used to. I get too tired. We can’t even always do fun things together on the weekend, I am too weak. It is such an up and down kind of thing that we are both at its mercy.
So, what is it like to live with sarcoidosis? It’s disorderly. It’s confusing. It’s painful. It’s lonely. It’s muddled. It’s maddening. It’s disheartening. It’s unorganized and it a mess!