If you become suddenly disabled or chronically ill - your whole world shifts. It’s a harsh adjustment to move from the land of the healthy into a world of constant sickness.
You lose friends & family, healthcare gets harder to access and you face discrimination & ableism.
I’ve written extensively about the experience of accessing medical care when you’re chronically ill. The challenges, risks and psychologizing that so rarely occur when you’re non disabled.
But there’s a lot more to the experience than just accessing healthcare.
In fact - many disabled people go to great lengths to avoid medical settings. Opting instead to hold themselves together with tape and glue.
The problem is - no one teaches you how to do this. There’s no welcome guide to the world of chronic illness.
It's why online communities are vital to our survival - because patients sharing stories help others learn how to manage their conditions. Many learn more from other patients than they will ever learn from HCWs.
Patients ARE the experts in how to cope with chronic illness.
Healthcare becomes a place for diagnosis and band aids - because chronic illnesses are not well understood. They don't get the funding or support they deserve and as a result - doctors are quite limited in what they can do for us.
That doesn't mean there isn't hope. There's a myriad of things you can do for yourself to accommodate your illness, improve quality of life, lessen pain and suffering and find a supportive group of people to get you through difficult times.
Accommodating does NOT mean giving up hope of a cure or improvement - it simply means accepting your disabilities and leaning into ways to improve quality of life.
Little changes can and do make a big difference!
I think about things like learning how to pace, the benefit of a shower chair, learning to put on compression socks BEFORE getting out of bed, having a hospital go bag at my disposal & an advance directive and substitute decision maker chosen and available.
The importance of having a robust at home first aid kit and learning basic medical care to deal with injuries. How to prepare a will.
How to reduce inflammation through diet & lifestyle changes. How to make your home more accessible. How to choose the right person to be a Power of Attorney.
These are just a few examples of things that have made a difference in my own life that I did NOT learn in a healthcare setting. I learned through trial and error as well as from the patients who came before me. The people who are the experts in the conditions I struggle with.
We must support each other - because if we won't - who will?
Building a place for support is one of the main goals for The Disabled Ginger. I've done a series of posts about the hospital experience & how to make it easier ... now it's time to move on to the welcome guides.
My focus will be on mini guides for each condition I deal with - as well as broader guides about how to navigate being chronically ill, accept your disabilities and improve quality of life WITHOUT the help of the medical system.
I hope you will join me on my journey and add your own important contributions. We all arrive at our disabilities from different places - and we are all unique. Every single one of us can bring a different perspective that will likely help someone else.
If there's a topic you want to see covered, something you've learned the hard way you wish someone had taught you, or anything you want to add - let me know.
I want this guide to be accessible to everyone - regardless of where they are in their chronic illness journey. For more you can read my newsletter & send suggestions or comments my way. Happy to have them!
https://www.disabledginger.com/p/theres-no-welcome-guide-to-the-world
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