themighty logo

When You're in Limbo Between Too Sick to Be Healthy, and Not 'Sick Enough' to Be Sick


If I’ve learned one thing about living with an invisible illness, it’s that my life exists in limbo. Though I generally tend to feel good, I live knowing that in the last two years, I’ve never once felt as healthy as I did before my diagnosis. I know I’m not healthy because I can feel it, yet I’m not nearly “sick enough” by most people’s standards to be able to consider myself sick, either.

Our society tends to sort people into two main categories: “sick” and “healthy.” We seem to live by the misconception that only those who appear to be visibly unwell actually are. But in reality, millions of people are like me in the world, millions of us who don’t fit wholly within either of these classifications and are misunderstood because of it.

Although I’ve grown tired of my job in hospitality, one of the reasons I stay is due to the relationship and understanding I have with my current employers. Having worked in my current job as a waitress and barista for the better part of five years, my bosses have known me on both sides of my diagnosis. They understand that at times, fatigue definitely gets the better of me, and there’s every chance that I may call up one morning unable to work due to my illness. I dread having to build another relationship like that, as the fact that I’m sick isn’t at all obvious and is hard for some people to believe and understand.

Though no one has outright uttered the infamous “you don’t look sick” line to me, I’ve seen it plain on many faces. Take the lady at the pharmacy once when I was buying medication: Checking out what was about 10 or so boxes of tablets and pills, she asked if it was all for the same person, and when I replied it was mine, she really needn’t have said anything, as her face alone said it all.

The thing is that I’m aware that I don’t look sick. Two years ago, if I worked at a chemist and a seemingly fit and healthy 20-something in gym gear checked out that amount of medication, I too would’ve been taken aback. But that’s exactly the problem. Before we know anyone on a personal level, we try to stuff them into so many different boxes using criteria like health, sexuality, gender, or even just lifestyle choices. Some of us just don’t fit, and may never fit.

It leaves me feeling a little conflicted, as I take so much pride in the time and effort that I consciously pour into my health, and yet doing so only leads to more misunderstanding about my condition.

When you see me in the gym it might look like I’m feeling strong and healthy, and that’s because I am right now. But you’ll have no idea how hard I had to work to be here. Maybe I don’t look sick, but I still spent nearly two years building myself up to be capable of doing the things most people take for granted, like getting up to work five days a week or making it through the day without napping.

I live my life in limbo, not healthy and yet somehow not properly sick either, constantly aspiring to achieve the everyday things that many of those who are “healthy” take for granted.

This post originally appeared in my column “The Girl Who Cried Wolf” on Lupus News Today.

Getty photo by Katya_Havok