Here’s the thing(s) about invisible disabilities…

Sep 17

I recently experienced some questioning about the validity of taking medical leave for abdominal surgery, and let’s just say I have some thoughts.

Here’s the thing (or I guess thingS) about having invisible/non-visable/hidden/non-apparent/unseen disabilities (for me, that includes hearing loss, Ehlers-Danlos Syndrome, and infertility):

You must be resilient.

The world takes you down partially and silently. Things that are normal for most are difficult for you. Things others don’t think twice about you think constantly about. And it’s all beneath the surface—nobody sees you struggle firsthand.

If you complained every time there was a problem well hey, you’d always be complaining and everybody would roll their eyes and be exhausted with you. They’d be tired of “hearing” about your challenges.

Well guess what? We are tired of experiencing and feeling our challenges. So what are our choices? Annoy and push away even our closest and most compassionate friends and family over time? Or…SUCK IT UP. Smile when you’re in pain, say it’s okay when it’s not. That takes strength, resolve, and resilience. And we have it in abundance.

The next thing is, you have to explain yourself to everyone.

Since our disabilities aren’t always obvious, we are assumed and expected to function like “everyone else”. You can’t see our disabilities, so they must not be that impactful right? WRONG. Our resilience and strength can often mask the challenges we face. This may seem like we are “fine”, like we don’t have pain or dysfunction, like our life is just like yours.

But it’s not. I can’t even count how many times I’ve lifted up my hair to display my hearing aids to an open-mouthed stranger who didn’t believe I had hearing loss. I get frustrated by how often I have to “prove” my disability to ignorant strangers (and to my workplace) in order to receive understanding, compassion, and accommodations.

Those close to me often say, “I don’t know how you do it” when I come to events, travel, go to work, laugh, even throughout medical issues.

Well the truth is, there is no alternative. If I stayed home, laid in bed, groaned every time my body revolted against me, I’d never see you, my friends and family and co-workers. I’d never explore, travel, adventure, succeed, thrive.

And here’s a reminder: just like EVERYONE, what you see on social media is not the whole picture.

And that’s about all I have to say about that.

In conclusion…

So pretty much everyday, I have to make a choice. Do I need to lean into my pain, my fatigue, my disability, and stay home, rest, say “no”, or complain? Or is my desire for life, for seeking my WANTS rather than tending to my needs, stronger? Do I once again, suck it up, go to work/take the trip/attend the event…even tho I’m sick, I’m tired, I’m uncomfortable, I’m healing??

healing is more than just physical - it's emotional, mental, and spiritual too

〰️

healing is more than just physical - it's emotional, mental, and spiritual too 〰️

Some might see me happy and smiling on social media when you “know” I’m sick, and assume, “umm, she’s faking it”. And to that I say: that is ignorance. You are lucky, that you don’t know the daily struggle I fight against. You don’t have a clue what goes into the choices I make, moment-to-moment, to be resilient, to say “yes”, to face the haters and the ableist society I live in, to occasionally leave the doctors advice at home and fucking SOAR.

tl;dr

Disability is diverse: sometimes it’s visible/obvious, and sometimes it’s invisible/hidden/non-apparent
Folks with invisible disabilities are strong & resilient AF
What you “see” isn’t always all there is