Friday, November 17, 2017

Part 2. Treating People With Chronic Illness Like They’re ‘Faking It’ Is Really Harmful

2. Treating People With Chronic Illness Like They’re ‘Faking It’ Is Really Harmful

That’s not a hyperbole.
My misdiagnosis with Bipolar Disorder resulted in my being medicated with a substance I was highly allergic to. I ended up having seizures after the first dose. It scared me so much that I didn’t seek any sort of treatment for a couple more years.
Meanwhile, my endometriosis got worse, eventually leaving me unable to attend classes or work. I was bedridden, without the energy to fight for my place in college, and unable to explain to any of the administration why I was ill.
Without the understanding of how my health affected my ability to attend, I had no recourse or strength to fight back when they decided to end my time at college. Rather than working with me on a solution, I ended up with a mountain of debt, no degree, and no income.
Many people with chronic illnesses are given options that are difficult, irrelevant, or downright impossible for us.
Our actual capabilities aren’t taken into account. And people figure, if healthier people can do it, we should be able to.
But for those of us with invisible illnesses, being treated appropriately can mean the difference between life and death. Some of us are given the wrong medical care (or worse, unsympathetic care).
This lack of acknowledgement occurs in many ways. People don’t think you really need that handicapped seat on the bus. They report you for having a handicapped sticker when clearly you can walk. They fire you from your job because they’ve never heard of your illness.
Many of us are accused of faking our illnesses when we need to ask for certain things: like asking that places be fragrance-free, needing to leave a loud party, or needing to take three naps in one day.
People tend to try to help when we don’t actually need it and then fail to offer assistance when we really need it. Paying attention, learning about illnesses, and listening to our experiences goes a long way to ensuring we can get the help we need.
Each chronic illness manifests in different ways. Sometimes we’re capable of certain things and other times we’re not. Checking in with us at each step along the way – for any activity – is best. Doing your own research on our conditions will give you a better understanding of our needs. It’ll also help us to save our spoons for getting through our day.
In many cases, it’s healthier for us not to push through our pain. It’s better not to force ourselves into uncomfortable situations.
And it certainly won’t help anything to add on stress (no matter how little) to our day.

In the end, it’s better not to make assumptions that make our days and lives harder.

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