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!

When it comes to chronic illness why do some people not like the warrior narrative?

When we find ourselves in conversations about minor illnesses, even a cold, there is a tendency for people to use the language of war, such as fighting or battling.

People with medical conditions are often called “warriors” and under this description are encouraged to battle their illness and push themselves.

Using the term warrior can be helpful for some people as a means of describing the challenges of being sick to others who are not living with an illness. But for others, the narrative can make them uncomfortable.

This isn’t to say that it’s not a struggle for them, but people with chronic illness are who they are first and foremost, and not a warrior.

Let’s look into why the warrior narrative doesn’t feel helpful and comfortable for some of the chronic illness community.

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Why wellness culture is toxic for chronic illness

With the wellness industry valued at $3.7 trillion in 2015 and continuing to be on the rise, it can be easy to get sucked into the latest wellness trends and crazes.
Many are jumping on the wellness bandwagon and while this may seem like a positive thing, it is not so positive when it comes to chronic illness.
There are juice bars on every corner, mindfulness apps advertised relentlessly on social media, and wellness influencers praising celery juice or the latest cleanse as a miracle cure. These serve as constant reminders of the unrealistic promise that you can recover from any illness with enough work.
But this is not the only reason why wellness culture is so bad for the chronic illness community.
Wellness culture has been influencing the beliefs of doctors more and more, to the extent that they believe it’s a one size fits all cure for everything, even if it ends up harming you in the long run.

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What’s the difference between person first and identity first language?

Who knew that as an individual with a disability, it’s our responsibility, to guide non-disabled people as to our choice of language to use about ourselves?
I knew there were going to be a lot of adjustments when I became chronically ill but I really didn’t anticipate this one!
The dehumanisation of the disabled has been, and continues to be, a huge issue and so choosing the type of language we want to be referred to by is a reminder to the outside world that we are still real people.
As shocking as it is, it’s still all too common to hear people saying things like “the disabled”, or referring to someone as “a wheelchair”. This is an attempt to separate us in society so non-disabled people don’t have to think about our wants, needs, rights or feelings.
So it’s time to take control of the narrative and dictate whether you want to be spoken of in person first or identity first language.

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The Handi Book of Love, Lust and Disability

Ok so I have never really talked about sex on my page but it’s something I want to open up the discussion of
I had the privilege for a long time of being able to pass as non disabled but once I started to use mobility aids it was then that I found that people stopped flirting. They stopped calling me gorgeous or sexy and instead I became inspiring and brave
The thing is I was still me. I like to flirt, I like to dress up in a sexy outfit and take way too many selfies. ⁠
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Why Is Community So Important When You Are Chronically Ill?

When I was first diagnosed I only had one person in my life I could talk to about being chronically ill and at the time I avoided doing that because I felt I didn’t have the right to complain about my lot because they were so much worse.
It wasn’t till I became part of the Instagram community that I really saw the benefits of not going it alone. But how do we find where we fit and what makes a good community?
It’s something that I have discussed with guests on the podcast more than once. When you first get sick it’s only natural to turn to the internet for answers, especially when doctors aren’t forthcoming with information about how to live with your new condition

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Inappropriate Questions

AAAAAARGH inappropriate questions! Where do I even start?
We get them day in and day out and the worst part is always that the askee never understands why it isn’t ok. Sometimes we are too tired to educate people, others we just don’t have the time but how do we get this information across so we stop butting up against this?
It’s no secret that my personal opinion is representation. Books, TV and media are an excellent gateway for people to learn about experiences different from their own but having worked in the TV industry I also know the uphill battle that we still have to fight.

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Episode 5 – Babe with a Mobility Aid

How do you use mobility aids and still feel like you? Often the images we see of people using mobility aids are dreary and it looks like their life is over but that’s so far from reality. This week’s guest is Annika from @LittlePineNeedle who started the amazing #BabeWithAMobilityAid movement. We talk about coming to terms with loss of mobility, buying your first mobility aid and what it feels like to start claiming the word disabled.

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Episode 2 – Community

At one point or another we’ve all taken to the internet to find out more about being disabled but how do you find the right community for you? Eva from the Instagram account @wheely_good_time talks with us about her experiences of becoming disabled and fall the things they forget to tell you, like how to actually use your wheelchair.

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