An Open Letter from a Former Spoonie: (If you don’t know what a Spoonie is, it’s a person who is living with a chronic disease. The term comes form The Spoon Theory written by Christine Miserandino. If you are living with a chronic disease and you don’t know The Spoon Theory, check it out and I’m sure you will relate. If you love someone with a chronic illness, The Spoon Theory will help you understand what life is like for them.)
To All of the Brave Spoonies,
You are my heros! You are some of the strongest people I know.
I want you to know that I see you. I lived for 6 years with a debilitating chronic illness and I understand how you feel. If you are like I was, I might even understand how you feel more than you do.
The thing that surprised me the most about feeling good again was how bad I felt before. I was so used to not feeling well that I didn’t realize all of the things I couldn’t do, or how much my illness effected my life until I could do those things again. I was amazed the first time I could yawn or take a deep breath or pick something up off the floor without intense pain. I was surprised how much it surprised me that I could take a shower or cook dinner without feeling exhausted. I think a lot of Spoonies are so busy being brave and doing the best they can that they don’t even realize a lot of the things that they are going through. I know I didn’t.
I didn’t realize I was being brave, but now I realize that I was. We all are. Just starting your day knowing it will be filled with pain and exhaustion is very courageous. You are a rock star! You are brave. You are strong.
There is hope. If you are living with a chronic illness, it is hard to see a light at the end of the tunnel. I didn’t. I didn’t believe that I would ever feel better. I tried medication after medication with no relief. When my doctor said there was a new medication available that he believed would really help me, I wanted to believe but deep down, I could only hope to feel a little better. But this medicine has essentially cured me. I have to take my shot every day or my symptoms will return, but I feel like myself again. There are new medications and treatments available all the time and doctors are learning so much more. There is hope for a cure for your illness.
Please don’t doubt yourself or believe the people who say you are being dramatic or just being lazy. You aren’t. Please give yourself permission to do as much as you can without feeling guilty that you can’t do everything. Please know that you are valuable.
* For those who are curious, my diagnosis are Immune Response Disorder, Fibromyalgia, Arthritis, Chronic Pericarditis. The medicine I am taking is Kineret. It was just approved by the FDA for off label use as part of the 24 “Orphan Drugs” approved recently.