Community

Being chronically ill and disabled can be really lonely. Most non-disabled people just do not get the issues we face daily. It’s why the community is so vital to us. But how do you find one that lifts you up and makes you feel better (not worse)?

We’ve all seen the Facebook groups that tell you, your life is over, and now you want something different. Well, you’ve come to the right place!

Why do I resent the healthy people in my life?

WHY DO I RESENT THE HEALTHY PEOPLE IN MY LIFE?
Truth time, my rage towards those I call ‘free range humans’ sometimes engulfs me in a ball of fury. The whining when they get a cold or have gone for a run and ‘ache’ after really gets to me and sometimes I have to repeatedly remind myself it’s not their fault. On their scale of body pain and tiredness they feel bad, they can’t possibly know that their bad day would be a good day for many of us!

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Why do the tests keep coming back normal?

WHY DO THE TESTS KEEP COMING BACK NORMAL?⁠
Imagine you’re feeling unwell. You’ve waited and waited, the tests finally come back in and the receptionist cheerfully announces ‘they’re all clear, no follow up needed’. There is nothing more devastating than feeling your body at war with itself only to be told there is nothing showing up on the tests. But why does this happen so often with chronic illness?⁠

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Will I ever get better?

WILL I EVER GET BETTER? ⁠
If you (or someone you love) are new to chronic illness, or still fighting for a diagnosis, this question has probably crossed your mind more than once. ⁠Even if you are a seasoned pro, that little voice can pipe up at the most inconvenient of times. Sadly, there is no straightforward answer to this. ⁠Chronic means forever, but it doesn’t always mean your body will feel the same every day.

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Getting family and friends to understand you’re disabled

GETTING FAMILY AND FRIENDS TO UNDERSTAND YOU’RE DISABLED
This is a tough one. Not only do disabled people have to do the work to get over internalised ableism and accept that yes, we are actually disabled, but we have to break it to everyone else in our lives too.
Cue the litany of “but you’re not like real disabled”, “you’re not disabled” and, my personal favourite, “you shouldn’t call yourself that”.

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Feeling confident as a visibly disabled person

FEELING CONFIDENT AS A VISIBLY DISABLED PERSON ⁠
There is nothing quite like the first time you go out with a new mobility aid. ⁠It doesn’t matter if this is your first time using one or you’ve just upgraded from one type to another. The questions, stares and insecurities all come flooding in and leave you wondering if you really need it. ⁠For a non-disabled person, this can be hard to imagine, with the idea that only people with obvious limb disabilities require mobility aids still a common attitude.

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Why is lived experience so important?

WHY IS LIVED EXPERIENCE SO IMPORTANT?
Or, you know, what the hell is it?
I have to explain the importance of lived experiences so regularly I feel like every person who reads this blog (particularly those who aren’t in the disabled community themselves) needs to keep passing it on to another person to read until, finally, the whole world just gets why lived experience is so crucial!

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My story has value

MY STORY HAS VALUE
This quote from Hannah Gadsby’s Nanette has always resonated with me but now more than ever: my story has value. When I launched the NYG membership I once again had the privilege to learn and listen to people’s stories of disability and chronic illness. Although our stories are similar, each is a unique and incredibly personal depiction of adversity, triumph and loss.
The complex diagnoses that accompany chronic illnesses and disabilities can often result in stories filled with the heart-breaking recounting of losing every part of yourself only to find something that much more beautiful beneath all those layers. For many, uncovering the vulnerable inner you and having the courage to finally step out into the light as your true self, accepting and acknowledging both your strengths and limits, is freeing.

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What is radical acceptance?

WHAT IS RADICAL ACCEPTANCE?
Radical acceptance sounds like the kind of new-age bull you might want to steer clear of, along with juice cleanses and ‘think yourself better’, but it’s not what you think.
Before we talk about what radical acceptance really is, we need to highlight what it definitely isn’t!
Radical acceptance is not approval of a situation. Just because you are accepting a situation for what it is, it does not mean that you think it’s good or right. It just means you are aware you can’t change it.
Radical acceptance, at its core, is about recognising what we can and can’t control in our lives. There are some things, like whether or not you become sick, you don’t get a say in. It’s about finding a way to live with that situation as peacefully as possible.
For many chronically ill people it can be hard, particularly when first diagnosed, to accept the challenges and limitations a chronic diagnosis can bring. Sometimes, it can feel that the negatives outweigh all the positives in our daily lives. Radical acceptance is one way to help balance the complexity of feelings chronic illnesses and disability can bring.

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How to create a support system

EVER WISHED THAT YOU COULD HAVE A CHRONIC ILLNESS FAIRY GODMOTHER?
Caring for a chronically ill bod is tiring, not to mention expensive, but what if there was a better way?
People living with chronic illnesses need access to so many things, in fact you need a team of therapists, physios, occupational therapists, nutritionists and so many more. However, it’s rare we get the chance to have all that and even if you do it’s unlikely everyone in the team really understands chronic illness and disability, which is the key to getting the best care.
Finding a specialist who really ‘gets’ what an illness or condition means for everyday living can take months or even years of research, trial and error, and is often an unaffordable expense.

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How disability makes you a better employee

HOW DISABILITY MAKES YOU A BETTER EMPLOYEE
No really!
If you remove the barriers to working, we actually make the best employees, here’s why!

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