“But You Don’t Look Sick”

I’ve been pretty open on here about my massive struggles with anxiety, not just during riding, but really in all parts of life. Another struggle I haven’t talked about as much is the fact that I have lupus, which really affects my riding – and my life – nearly as much.

As I’ve struggled through a particularly bad week this week healthwise, I’ve reflected a little bit on what it means to be a rider and, well, just a person in general, living with an “invisible” illness.

For those who aren’t familiar with lupus, it’s an autoimmune disease that tends to strike women in particular in their 30s. It manifests differently for everyone, but can affect everything from joints and muscles to your kidneys, digestive system, lungs, skin, circulation and everything in between. Weird rashes, stomach issues, weight loss, general inflammation, awful joint and muscle pain, fingers turning blue, pleurisy… all things I’ve dealt with at one time or another, among other things.

Which means that I am not always on my game with riding. My struggles with joint pain often make me weak with insecure legs and bad equitation. I sometimes feel nauseated to the point of being unable to ride. I don’t deal with heat well and get incredibly light-headed at times in the summer. Along with sometimes just being so incredibly exhausted, the likes of which you can’t fathom unless you’ve experienced it.

I know that I try to weenie out of things sometimes due to my anxiety, particularly with jumping. I’ll own that. But in the case of my lupus, I tend to try so much to NOT lean on it as an excuse that I sometimes push myself too much. I’ll ride to the point I shouldn’t, or ride on days I should have just stayed in bed. I go out of my way to prove to myself – and others, I suppose – that nothing holds me back and that I’m OK. Even if I’m not.

You see, that’s one of the terrible sides of having an invisible illness such as this. I sometimes feel compelled to just pull myself up and act as if all is fine, because my outside doesn’t match my inside. You might look at me and think, huh? She’s totally fine. She must be faking it or exaggerating. In fact, I’ve had precisely those sentiments directed at me. Whether out of kindness or in the vein of questioning, I’ve had so many say, “But you don’t LOOK sick….”  Which if you’ve ever said that to someone with a chronic illness, Imma stop you right there and say please don’t ever say that again. You may have the best of intentions (or sometimes not, perhaps), but it FEELS so demeaning. Whether you meant to or not, it says to us that our illness isn’t real. It’s not tangible or visible, so it must not be that bad and we must be exaggerating.

But really, it can be that debilitating. Very much so.

I actually started riding again not terribly long after I first became ill, as a way of strengthening muscles and improving my outlook. My sweet husband was the one who encouraged it, as he hated seeing me so depressed at the fact that I was just saddled with a diagnosis that will follow me the rest of my life. But, now my love of horses will follow me as well, acting as the shining light in my life when all other lights fail. My own personal Light of Earendil.

It may not have been the wisest idea to take up such an outdoorsy hobby when the sun can literally make me ill. But it’s been so good for me in so many ways that I’ll take the good with the bad.

So here is my plea to you, fellow riders. If you see someone struggling physically, whose leg may suck a lot, or who doesn’t seem to have the needed stamina for the task at hand… or who stops because she can’t go on at that moment…. or cancels out on what you think is one too many lessons. Please be kind. Don’t assume it’s out of laziness or inability or a lack of will to succeed and improve. Don’t assume he or she is just full of dramatics or faking it. Sometimes, just merely showing up is our own personal act of resistance and fortitude.

Know that there are many of us out there living with invisible illnesses who ride in spite of it. Who carry on because the alternative is just not OK for our mental well-being. For all my sisters out there who “don’t look sick,” don’t ever give up. You’re stronger than you know, inside and out.