I have lived with an invisible chronic illness for most of my life, but until I became very ill in 2004 there was something I didn’t know about invisible chronic illness. I didn’t know just how hard and physically challenging it truly could be. I didn’t know how exhausting it was to do what appeared to be easy tasks.
I used to think that if someone had a wheelchair because of fatigue that they felt okay while sitting in the wheelchair. Now I know better. When you have a chronic illness, it can be absolutely exhausting to sit in a wheelchair.
I used to think that if someone was tired that they could ride in a car easily enough. You’re just sitting after all. That is resting, right? Now I know better. It takes a lot of energy and muscle strength to sit up, especially when dealing with turns and bumps in the road. When I was healthier I never realized how many muscles I was using to sit up straight in a car and not fall over when we hit a bump or turned a corner.
I used to think that one could push through fatigue and keep going even though it was hard. It was possible to keep moving even when tired, wasn’t it? Now I know better. It isn’t always possible to keep moving. Sometimes the muscles give out because of fatigue. Sometimes pushing through fatigue means that you won’t have energy to get out of bed the next day. Sometimes fatigue can be so extreme that the simple task of washing your hair is impossible.
I used to think that if someone looked good and was smiling that they must be feeling well. Now I know better. It is possible to smile just because you are happy, not because you feel well. It is possible to smile even when you can hardly see because you are about to faint. It is possible to smile through headaches, intense pain, nausea, weakness, and fatigue.
Invisible chronic illness looked a lot easier when I was only mildly affected. I didn't know how hard it was for others. Looking back, I am amazed at some of the people I knew who lived life with severe pain or a very disabling illness. They lived with joy. They delighted in life with all they had. They worked harder than I ever realized, and probably harder than I even realize now. They taught me lessons of courage and joy by their examples. They are my heroes.
You can find all of my posts for Invisible Illness Week here: Invisible Illness Awareness Week 2014.