"You look great!" my friend said.
I just smiled. I know I don't look great. I still have the Prednisone pie face going, I have purple circles under my eyes that I always get when I'm tired, and I've gained more weight than I'm willing to admit to.
But there's no obvious sign of my illness, and I can even fake that I have energy for at least a little while when visitors come, although I'm told my fading is pretty obvious for those who know to look for it.
But I don't look ill to someone who doesn't know me very well. And that's both a blessing and a curse.
I came across the But You Don't Look Sick website ages ago, long before I got sick, and I remember sending the link to my mother, who has myasthenia gravis and has complained about the invisibility of her illness.
And now I'm identifying with it.
Fatigue and joint pain and all my other symptoms don't show on the outside. So it's easy for people to forget that I'm sick, or to discount it.
I feel a little defensive when people tell me I look well, or like I'm feeling better. I realize that they mean well, and they're being hopeful for me. But it seems like I hear those things most when I'm feeling the worst, and I don't know how to respond. Do I start detailing the way I feel? All my symptoms? Do they even want to know?
Usully, I mentally roll my eyes and smile and let the remark go. The people closest to me ask how I'm feeling instead of jumping to conclusions based on their observations. And really, they're the only ones that matter, right?
5 months ago