Disability (In)Justice is a package exploring where the fight for disability rights and inclusion stands.
Dealing with sickness and disability when you’re young can mean many things, from frequent doctors visits, to missing out on hanging with your friends, to dealing with the many, many misunderstandings about your condition.
There are many misconceptions about being disabled and chronically ill, chief among them that if you’re young, it can’t happen to you. For the more than 3 million young people in the U.S. who are disabled, it’s clear that isn’t true. Beyond that, many chronically ill and disabled people deal with these misunderstandings big and small each day: Maybe you have an less visible illness that prompts people to assume you’re not as sick as you really are, or perhaps people make assumptions on what you can and can’t do because you use a wheelchair.
As part of a series of stories on disability and chronic illness, Teen Vogue asked 14 young people who are chronically ill and disabled what they wish able-bodied people knew about what it’s like to be sick and young. Some said they wish their able-bodied peers understood the mental and emotional toll their condition can take. Others said they’re sick of the assumptions made about them, like that they’re automatically brave, or lazy because they can’t do everything their peers can.
Here’s what these young people wish others understood about them:
A lot of being sick when you’re young is mourning the life I don’t know I’ll get to have anymore.
I’ve learned to ‘crip’ my time; to adapt time to a measure that fits my chronically ill experience. To embrace the ways that I no longer exist within the constraints of the normative able-bodied time frame, and to enjoy the liberation that comes from it where I can create a time frame that works with my body and its capabilities. I think there is a lot of freedom to be found in that.
You’re not alone, even if you feel isolated. Focus on the people around you who express support and empathy. It’s a long journey so stay strong and don’t be afraid to advocate for yourself with doctors.
We’re not “lazy.” It’s possible to be sick and young. There’s a lot we’re missing out on. We’re still normal people and want to be included.
People think we are automatically brave or inspirational. Are hospitals and surgeries and medication and specialists scary? Sure, but what other choice do I have? People saying I’m brave for going through what I have show me that they think being disabled is a death sentence and a tragedy they couldn’t imagine themselves going through.
If I look okay, I still might not be okay.
I wish people knew how difficult it is to see your friends out having fun together and doing activities wishing you were there with them, but maybe that day you are physically unable to get out of bed because you are too tired.
It’s not always obvious that I’m in pain. I’m always in constant pain even if it doesn’t seem like I am.
I wish people knew that we aren’t just trying to get out of school/work/chores/other social commitments and that we are actually sick and need to rest. Just because you can’t see a physical sign of being sick doesn’t mean there are none.
If I were to talk to someone who is just now starting the journey of chronic illness, I would want them to know there is a light at the end of the tunnel, even when you don’t think there is. No matter how many doctors dismiss you, there will always be that one that won’t and will fight for you and with you.
I wish people knew about how exhausting it is. Not just the fact that the illness is making you tired, but the people around you are making you tired.
We are still people, we are more than our illness. We still have personalities, lives, hopes and dreams, just like other children and teenagers.
I didn’t have representation growing up. I (thankfully only temporarily) gave up on multiple dreams of mine because I didn’t see a wheelchair user doing it, so I thought I couldn’t. It wasn’t until I just turned 19 did I see a wheelchair user character in a movie be played by an actor who’s actually a wheelchair user.
If you’re just now starting this journey, know that your life is not over, but it is changing. It’s important to surround yourself with a community of people who can love and support you.