I’ve discovered one social constant with my invisible chronic illness. When there’s not a visibly horrible deformity for people to latch onto, there’s always one question that bubbles beneath the surface. “Are you sure you’re really sick and that it’s not just in your head?” I’m here to tell you: yes I’m sure; and while I may look like I’m just fine, there’s a mountain’s worth of adaptations I’ve made to make sure sure that I can pass as normal.
Here’s what you need to know about my invisible chronic illness that you wouldn’t know by immediately looking at me.
1) There are days I wake up and just don’t have it.
Some days, I wake up, and I just don’t have it. It may have to do with another interacting illness or a bad night’s sleep, but sometimes, I can sleep, exercise, eat well, and still wake up without being able to function. Here’s the exciting part: I can’t always predict when these days will happen. It’s like playing Russian Roulette with your body. Most of the time the chamber’s empty, but occasionally, all your plans will have to be chucked out the window.
2) My normal is not your normal.
When you say, “How are you doing?,” I will probably answer, “Okay.”
Sometimes that’s because I’m lying through my teeth.
Most of the time, I’m genuinely telling the truth. It’s just that my “okay” is very different than your “okay.” When you have an invisible chronic illness for a while, you develop a new “normal”, one that is “okay” for me, but you wouldn’t consider “okay” for you.
So what does my normal look like? Here’s one example.
When you ask me to do something, I may say yes, but I’ll be paying for it a lot longer than you will. For instance, I moved earlier this summer. It was a crazy, chaotic, stressful week, one that involved a lot of coffee and a lot of boxes. It would have been an exhausting for anyone. The difference is this: you take a few days off, grab a few extra cups of coffee, and power onwards, no harm done. For me, it is now a full three months later, and I’m still not back to what I was before I moved. Don’t get me wrong, I’m improving, but there’s a good chance I won’t be back to normal until Thanksgiving.
3) My time is my most valuable gift.
I don’t get a lot of A-level days and I don’t get a lot of A-level hours. I work like a fiend whenever I’m feeling good, because I don’t know when that will change and how much my plans will be disrupted as a result. If I commit to something with you, especially if it involves disrupting my sleep, having multiple long days in a row, or giving up the good part of a workday, know that I’m giving you a huge gift.
4) I’m probably not getting better anytime soon (and I’m okay with that.)
There is no one more invested in my health than I am. There is no one who has done more research about my illness than I have. This is just my reality. I’ve learned to live with it, to adapt within its limitations, and find joy in a life that is more physically limited than most. My guess is that I’ve probably heard of whatever medical remedy that you discovered on Good Morning America, and there are good reasons why I haven’t tried it, or why I did and it didn’t work for me.
I’m not miserable either. My illness has offered me great gifts. I’ve learned the value of stopping and resting, which is something that this type-A personality would never have learned if I didn’t have my face rubbed in my limitations all the time. I’ve learned compassion for the elderly, because I have the energy of someone much closer to seventy than to someone who’s thirty-two. I’ve learned to be sympathetic to outsiders, because my illness has often made it difficult for me to form friendships and be accepted by my peer groups. There are substantial ways that being sick has made me a much better person that I would ever be otherwise.
In other words, next time you see me (or the millions of people like me), just remember:
Yes: I’m actually sick.
No: I’m not getting better anytime soon.
Yes: I still live a meaningful life.
“You look fine to me!” Of course I look fine, that’s why we call it an invisible chronic illness.
 And no, it doesn’t matter how much extra coffee I drink, whether I take an extra nap, or whether I’m using your latest exciting herbal concoction.
 Even more exciting: I may not know whether I’m chronic-illness-tired or just-plain-tired until I’ve tried a few cups of coffee and attempted to start my day.
 If I’m doing poorly, I’ll probably just say, “I’m sick.” Ironically, I find that people find it far easier to be compassionate when you have a cold then when you have an invisible chronic illness.
 What is that normal? See point one.