My top piece of advice to anyone who is new to disability (diagnosed or not) is not to wait for permission to do things that will help you feel better.
I am not saying this to be quirky or cute. I mean it.
No one is going to magically appear and tell you that you have now officially had enough falls to justify using a mobility aid. You won't get a letter in the mail stating that today you are tired enough to use baby wipes instead of taking a shower. No carrier pigeon will arrive with the message that you're now disabled "enough" to buy a shower chair, or knee braces, or literally anything else that you might need.
The unfortunate reality is that the vast majority of us begin our chronic illness or disability journeys without adequate support. We have to make the decision to adopt these labels for ourselves first, and end up spending countless hours doing our own research and testing out different ways to improve our quality of life.
This can be an exhausting but also very rewarding process.
My disability does not define me, but I believe it is an important part of me and that I have the right to adapt the way I live in order to work in harmony with it, rather than against it.
The more I embraced this idea, the happier and more confident I became. I no longer experience guilt for taking "shortcuts" in life, or doing things differently to other people my age.
Take pride in the challenges that you've overcome due to disability, but don't make the mistake of thinking that you are obligated to KEEP finding everything challenging indefinitely.
Embrace your disability in a way that lets you streamline your energy and focus on your unique strengths, and what's most important to you in life.
This is a message I wish I'd heard earlier. I have spent a huge chunk of my life trying to fit in with the able-bodied world, and struggling to connect with others on a genuine level. Now that I have accepted my disabilities I am much happier and more grounded.
Yes, I have had to grieve some of the things that disability has taken from me, but I also celebrate the gifts it has given me.
I have my priorities in order and no longer waste my energy on unimportant things. I also bring a special level of empathy to my interactions with others. I now believe that my true purpose is to use what I have learnt to help other chronic illness and disability warriors (especially young women) break through the cycle of shame and isolation that I went through.
Jess is a 27-year-old, Australian/Anglo-Indian girl who now lives in Belgium. She is a former music teacher and performer who is currently in full-time rehabilitation for several chronic conditions including Hypermobile Spectrum Disorder, Dysautonomia, Gastroparesis and migraine.
She also has undiagnosed episodes of partial paralysis which inhibit her ability to walk and perform daily tasks normally. She recently started her blog Delicate Little Petal to discuss her messy journey to diagnosis and explore ideas of self-love and self-expression as someone who newly identifies as disabled.
This story by Jess was originally featured on The Unique You Facebook page and has been reproduced in Astro Ulagam.
Mon Jul 26 2021