Disability Pride & Me

Today is my second anniversary of life with celiac disease, and it’s also the last day of disability pride month. This month has been one where I’ve been doing a lot of thinking about what it means to have a disability and what it means to be proud of who you are with your conditions. This month has been a lot.

I’ve been pondering one question really deeply all month. Since being diagnosed with two autoimmune diseases (type one diabetes and celiac disease) and generalized anxiety disorder, I haven’t considered myself to be a totally healthy/able/“normal” person. But I also don’t consider myself to be sick exactly, because I’m not really sick. Like, everything is as good as it can be, health-wise. My management is good and all that. So if I don’t fit the definition of totally healthy (I survive on insulin, gluten-free food, and therapy), but I’m also not sick (my health isn’t declining or anything like that), then where do I fit? What am I? What’s the word that describes me? What community would I fit into?

All month I’ve been wondering if the word “disabled” answers those questions. It’s been a month of self-doubt and questioning and confusion and frustration and exhaustion. More questions had to be considered. Am I sick enough to be considered disabled? Do I deal with enough? Do my conditions intrude on my daily life enough? Is my life hard enough? Celiac and anxiety are invisible, do they still count? Yes I wear devices, but they’re small and usually hidden by my clothes, so do they really count as something that make my diabetes visible? Does diabetes count if it’s not visible? Do invisible illnesses really count? Am I just looking for attention? Will people think I’m just looking for attention if I’m openly calling myself disabled? Will they think I’m sick enough? AM I sick enough? Am I enough?

Hard questions.

I’ve seen lots of type one diabetic Instagrammers posting about disability pride month since the beginning of July, and seeing their posts and hearing their stories made me, first of all, proud of anyone who’s brave enough to talk openly about their experiences, and second of all, kind of scared. Scared that if I talked openly about disability, it wouldn’t be received well by the disabled community, because... well, because I’m doing well with my management and my conditions aren’t as visible as a wheelchair or an oxygen tank would be. I didn’t want to make anyone who identifies as disabled feel like I’m using the word disabled in a non-serious way, or like I haven’t really considered whether or not I count, or like I’m just looking for attention (which I’m really really not). It’s a really serious matter, and I really do understand that. I also was scared that other type ones who don’t like to describe themselves as disabled would feel like I’m trying to force the label on everyone with type one diabetes. I’m really really not trying to do that. I don’t think disabled is a bad word, but if you don’t like to use it, then I’m not forcing it on anyone.

But honestly, I wish I could’ve been talking openly about disability all month long. I think about the word disabled and it just feels like it fits me. That’s why I like it. Not for attention, but because it’s me. Me, with the devices and the tracking sugars and the midnight lows and the quarterly A1Cs and the fear and the loss of freedom and the mental burden and the never getting a day off. Me, with the never eating out and the taking my own food everywhere and the having to say goodbye to foods I’ve loved my whole life and the forgetting what they even taste like after two whole years and the not being able to get gluten-free options from places that aren’t exclusively gluten-free because I’m so scared of getting accidentally glutened that the fear ruins the whole experience. Me, with the being scared of change that’s inevitable and the always being the one who cries and the irrational fear and the panic attacks and the constant need for reassurance and the anxiety that seems to have no cause and the being exhausted from always waiting for something bad to happen and the getting worse right when I thought it would be getting better. Me with all the doctor’s appointments and the yearly bloodwork and the having my innocence taken away before I was ready to lose it. Me with everything. Me.

I love my life. I love myself. I love how much I’ve grown.

I give myself full credit for my growth/strength/whatever, not my conditions. They didn’t make me strong. They made me broken down and weak and sad and angry, and then I was the one who picked up the pieces and made something new and beautiful out of them. Me and my family and my closest friends (you know who you are 💗💛💙).

Do I wish I didn’t have all the conditions I have? Yes. But I also can’t say that they didn’t contribute to the person I am today. And I love who I am today, so I can’t wish my conditions away.

Who I am today is a disabled person. I’ve finally said it. It feels like the truth. It feels like who I am. And I just want to say that I am proud of it. On the last day of disability pride month, I’m here saying that I’m proud of who I am with my disabilities. I love myself wholly and I am proud of how far I’ve come. It’s been a road getting here, but I made it eventually.

What have I learned this month?

That disabled isn’t a bad word. Invisible illnesses count. Ableism is everywhere and we have to do the hard work it’ll take to unlearn it and to educate others about it. That being open about who you are is really hard, because there’s always the fear that people will reject it. That even just being honest with yourself about who you are is really hard because people might reject it. But I’ve also learned that I can deal with it if they do. That I’m secure enough in my identity to know that I’m valid and important and loved. And that at the end of the day, the most important thing is that I love myself. And I do.

Days I was proud with my visible and invisible disabilities:

A bit of context for these last four photos, since the disability is not obvious in those ones!

Firstly, celiac has made going anywhere away from home a struggle because I always have to bring all my own gluten-free food, and this summer I stayed with my grandmother alone for a few days for the first time since I was diagnosed, which was a big deal. Secondly, change is hard for me with anxiety, and I've had long hair for a year, so cutting it short was a big deal and something that I expected to be a lot harder for me than it ended up being, so that was a success. And last, I also kind of started learning how to drive?? Which is crazy cool because the thought of getting into a car used to make me immediately fear getting into an accident so this is a really huge step for me :)

Since I wasn't comfortable posting anything about disability pride month the whole month of July, I figured I'd make up for it in the last hour of the last day of it. Next year I'll be ready on July 1st :)

So happy disability pride month to all! Keep fighting the good fight and always be yourself, I’m so proud of all of you 💙💙💙