Advice I Wish I Had When I First Became Chronically Ill: For the newly chronically ill, from us old timers! Part 2.

A teddy bear holding a tissue and thermometer sitting by a medicine bottle.

Collaboration between Stef May, and Dax Everritt (Diary of a Disabled Person).

You can read Part 1: Stef’s advice here.

Part 2: Dax’s Advice:

I’ll start with the hardest piece of advice and scale it back from there!

Unlearn Your Internalised Ableism.

Ableism, put simply, is discrimination against disabled people. This can be blatant and intentional, or it can be the accidental but still harmful consequence of thoughtlessness, such as parking on pavements or over crossings. It also includes certain attitudes towards disability that are based on prejudice, such as the idea that we cannot have any independence or intelligence purely because of our disabilities.

Internalised ableism is what happens when you yourself are disabled, but still think or behave in an ableist manner, and even those of us with chronic and lifelong disabilities can fall afoul of it. If you’re newly disabled, having to unlearn decades of able-bodied privilege and ableism is going to take time, so don’t beat yourself up about it.

That said, you should definitely let your experiences as a disabled person, and the guidance of other disabled people, change your attitude towards disability. Read books. Go online. If you can, go out and about and gain literal experience in being disabled. Unlearn ableism.

Stef: Internalised ableism can look like calling yourself lazy because you’re unable to do something, thinking your life is a tragedy because you’ve now got to live a disabled life and finding mobility aids shameful. When you start to recognise these thoughts for what they are (internalised messaging about what disability is, applied then to yourself as a form of self-discrimination), you can begin to unpick them and start being a lot kinder to yourself – It’s a process for sure, but it’s healing.

I find learning about the diverse range of experiences others with disabilities have, especially those from different walks of life to you, definitely opens up the way you see and think about disability.

“Lazy” Products are Accessibility Aids.

I have incredibly strong feelings on products that market themselves as being for “lazy” people, when in fact they are making the lives of disabled people so much easier. Buying pre-chopped produce is not going to push climate change any further into overdrive, but it will save you a lot of energy and help you cook. I have several aids just for helping me open jars and cans; it’s no different to having a corkscrew or can-opener really. It was expensive, but getting a robot hoover has made cleaning the flat significantly easier, and sticking large googly-eyes on it is hilarious.

I’ll admit it came with the rented apartment, but I also love my all-in-one washer-dryer; instead of having to heave damp clothes between two machines, I put in dirty, dry clothes and take out clean, dry clothes. I also don’t bother ironing unless I absolutely have to. Screw that.

Manage Your Temperature.

One symptom I absolutely was not prepared for was how my body temperature would soar and plummet with almost no control. If your body isn’t regulating it’s temperature any more, then you need to use your environment to do it for you, and it is at least partially possible to do this without putting the heat on.

This is probably easier in the cold. I have large, thermal mugs which retain the heat for longer, and reduce how many times I need to go back to the kitchen for refills. I also have blankets, cardigans, chunky socks, and even fingerless gloves readily available. Lots of layers not only provide more effective insulation due to the air trapped between them, but allows more minute control over your body temperature as you can slip things like a cardigan on and off with relative ease. I also prefer microwavable bean-bags instead of hot water bottles, which are quicker to heat up than boiling a kettle and don’t use an abundance of water.

The heat, however, is trickier. Hydration is key, so I keep a large water bottle to hand. Loose cotton clothes are important, as is keeping the curtains mostly closed. Filling a sink with cold water will act as a literal heat sink, drawing heat out of the air as water evaporates, and provides a quick way to cool down if you submerge your hands or feet and splash water on exposed skin. If you go out, don’t forget to wear sun screen!

Make Notes.

While heading into a room and then forgetting why you’ve gone in there is funny the first time, moving around wastes precious energy. Brain fog makes concentration and short-term memory problematic, so don’t be afraid to make reminders for yourself. Recently, I set alarms for taking a temporary medication that fell at odd times throughout the day. I also have a calendar in my office, as well as the one on my phone and computer. Most phones have a notepad but I’m old-fashioned and prefer to use post-it notes or notepaper for the same purpose. Getting in the habit of making notes for yourself will help you immensely.

Stef: Notes on symptoms as they’re occurring are also great, even if it’s in video or audio form, to bring along to doctors appointments!

There is no Shame in Being Disabled.

Some of your friends and family members, medical professionals, and even total strangers are going to try and make you feel ashamed about your disability. They will blame you for not trying yoga and kale. They will claim you just “don’t want” to get well. They will say you’re faking it for the masses of funding and attention we apparently receive the second we fall ill.

The thing is, it doesn’t actually matter how much of a demonstrable effort you make to fight a condition that simply cannot be fought. You can engage with therapies that tell you being unable to walk due to the pain is just a matter or laziness, or that you can think yourself out of an illness, and when it fails you will still be blamed for “not trying hard enough”. You can explain until you’re blue in the face how being able to stand or walk briefly does not mean you can walk as much as a healthy individual, you will always be accused of fakery.

At first, this made me incredibly depressed. Then, as time went on, I began to realise that people can try to shame us as much as they like; it won’t make us better, just like all of the other rubbish they spout. Engaging with them is simply a waste of energy.

Your chronic illness or disability is not a moral failure, and there is no shame in being disabled, no matter what others try to say.

Both of us could probably fill a book with advice and experience on being disabled; the above simply scratches the surface. That said, we hope that what we’ve written proves useful to those who have only recently had to adjust to being disabled.

Stef and Dax.

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