The Mighty Logo

Why My 'Invisible' Illness Isn't Actually Invisible At All

The most helpful emails in health
Browse our free newsletters

I’ve written about how hard it is to live with an invisible illness before, but today I’m going to tell you why my illness isn’t actually invisible at all.

While on some levels you cannot see my symptoms and I do my best to make sure of that, if you look closely enough you can sure as hell see what they’ve done to me. You can’t see see the pain, the numbness, the fatigue or the cognitive impairments but if you look at my life you will know that they are there.

If you watch me walk, you will see that there is no hop in my step anymore. It has been replaced with a limp, a drag and an unsteady fumble. You will see me struggle, short of breath and ready to collapse into the nearest chair. There is no hop, no bounce and certainly no skip to my step anymore.

If you engage in conversation you will find the well-spoken, articulate girl who once spoke to you before now mumbles, stutters and struggles to find her words. I forget what I’m talking about midway through a sentence or sometimes I forget that I was even talking at all. All those years of public speaking have faded, lost behind some cognitive fog that clouds my mind.

If you look at my appearance, my makeup is no longer perfectly applied and my hair is no longer nicely styled. Instead I wear a messy bun and often am barefaced. The freckles I once compulsively hid are always exposed, my perfectly groomed brows are now overgrown and untidy, my eyes are no longer winged and colored, they are plain and barely open. My clothing is not tight and stylish, instead it is loose and comfortable. A girl who was once admired for her quirky style has become someone who can go all day without looking in a mirror. My illness has taken away my energy and coordination which is shown by the changes in my appearance. I wish I could say my relaxed appearance was due to a confidence boost, but I am still the insecure girl who feels the need to hide behind her makeup and nice hair — I just don’t have the energy to do that anymore.

If you look at my weekly schedule you’ll see that my university classes have been replaced with naps. My work shifts have been replaced with doctors appointments. My dance classes have been replaced with… well that’s just the thing, there’s nothing else. It seems my life is made up of naps and doctors appointments — neither of which get me anywhere. I’m living a whole different life to what I had seven months ago. It not even remotely resembles what it used to be. If that doesn’t show you how huge my illness is then I don’t know what will.

If you enjoy a meal with me, you will see me struggling to cut my food, missing my mouth and losing appetite because it’s just too hard. You will see me using two hands to drink my coffee because I do not have the strength to just use one. Some days you will not see me eat at all, because I don’t always have an appetite — some days I have to force myself to eat despite not being hungry at all.

Some days I wish my back pain showed swelling or bruising that reflected the way it feels — but it doesn’t. Some days I take my shirt off and stare at the reflection of my back in the mirror. Why can’t I see the pain? Why does it hurt so bad but look so normal? We have this screwed perception that pain must be displayed on the surface but that’s not the case for everyone.

Some days I wish my numbness turned my hands or legs a different color so you could see it also. I stare at my hands and wonder how they can feel so different but look just as they did before. They are my hands but they feel foreign to me.

Some days I hate that my illness is invisible. I hate that it isolates me and makes me feel alone because only I can see and feel it. But today I am telling you my illness is not invisible. My illness is obvious to anyone who looks beyond the surface.

As much as I try and hide my symptoms from the world, it doesn’t take a genius to see the impact these symptoms have on my life. Invisible illnesses are not really invisible at all — we just choose to only look at the surface and don’t see just how massive they really are.

Follow this journey on Finding Rainbows in the Dark.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by panic_attack

Originally published: May 2, 2017
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home