Want to know a secret? It look twice as long as it used to for me to shower/bathe, do my hair and put on my shoes. Every bit of my energy is accounted for. There is a hierarchy of must dos on my daily list. Anything related to my kids and anything related to my job comes first. Then I’m simply exhausted. It’s maddening to me because my mind races with all the things I want to do that I simply cannot do the way I used to do. My full-throttle is now three-quarter speed.
There are days that I work with my hair in a ponytail and wear yoga pants two days in a row. There are days that my feet feel like I’m walking on razor blades. There are days that my head throbs and my body feels like I’ve been hit by a truck, my hands get so swollen that I can’t take off my wedding ring or even type on a keyboard. But I keep going.
The other day I used my disability parking placard for the first time. A heavy-set lady gave me the side-eye and I just smiled at her. I know she was judging me.
No, I may not look sick, but I am. Reserving the energy (and pain) it takes to walk a long parking lot with an armful of groceries will help me accomplish all the other things you do that you take for granted.
Looks can be deceiving. What I want people to know about me (and all chronically ill people) is that I will have good days and not so good days. I may look amazing one day and like a homeless woman the next. That's just my life. And not "looking sick" helps me to feel better about myself and hang onto some normalcy.
Rather than tell someone with a chronic disease that they “don’t look sick”, how about asking if there is anything you can do to help, words of encouragement or a gentle hug.
I like invitations to hang out, eat a meal, or watch a movie!