The Pain of Misunderstanding
Recently, I thought I had found a group of friends who would stick by my side, who understood what I was going through, or at least tried to.
I live with severe type 1 narcolepsy, a rare disease that is frequently misunderstood by the general public and even by many medical professionals. I spend most of my time as a rare disease advocate doing what a rare disease advocate does: advocating. It never ends.
Explanations are harder in words versus in writing
Rare disease advocacy as a writer is one thing. I am safe here, worlds away from the people consuming my words about narcolepsy and the struggles I face because of it. This type of rare disease advocacy feels much easier than the advocacy required in my own personal life.
In my personal life, I am constantly forced to navigate venues of advocacy that feel far less safe. They are less straightforward. Boundaries are harder to maintain. Explanations are made verbally rather than in writing, where I excel in expressing myself. When it comes to speaking my mind on the page, I have no issues whatsoever. When it comes to speaking my mind in person, it is much more difficult.
The unpredictable nature of life with a rare disease
I think the dynamic nature of rare diseases confuses people. Some days, I am able to do more than others. Most days I rot in bed, too tired to get up and take care of myself or my responsibilities. On my worst days, I lay in bed with my stomach growling for hours, too exhausted to lift my limbs and feed myself.
So when I cried to my friends that I felt like a disappointment since I couldn’t be there for them as much as I wanted to, and they reassured me that they understood, that they accepted my disease severity and would support me however they could - I believed them.
But, just a week later when I had to cancel a last-minute-scheduled dinner get-together – they decided that I was not a good friend anymore. That I didn’t value them. That I was not worthy of being trusted.
I thought my friends would understand
In reality, I was having one of those bad rare disease days. The kind where my limbs felt so heavy that I couldn’t lift them from my bed to even use the bathroom.
It was the kind of day where I laid there in bed, with my overfull bladder aching for relief, yet I couldn’t force myself to get up and empty it. I couldn’t make myself get up to eat lunch. Hours passed like this, between the fog of sleep and awake. And that’s how I knew I needed to cancel.
When I canceled with friends and told them that an activity the day before "did me in for the weekend," this is what I meant. I thought I didn’t need to explain the severity of it. I thought they’d understand. But instead, they took it personally.
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View all responsesThe part that hurts the most
How many times can one person explain their rare disease and still be misunderstood? Apparently, the limit does not exist.
The worst part is that I believed them when they said they understood. I think that’s the most painful part — feeling safe enough to be myself and being proven wrong.
Do people often misunderstand the severity of your rare disease? Or take your symptoms personally? Let us know in the comments. You are not alone!
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