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When You're Chronically Ill Facing Chronic Isolation

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I grew up in strict environment where appearance, material acquisition, and climbing the corporate ladder were everything. Anything less was failure.  Happiness wasn’t part of this equation, and neither was disability. My family was a “no excuses” family. There was no reason one couldn’t be a jet setter CEO of some corporate enterprise, regardless of life’s intervention.

I have rheumatoid arthritislupus, Sjogren’s syndrome, and hypermobile  Ehlers Danlos Syndrome. I’ve had them since I was a child. My body is literally dissolving on the inside with multiple soft tissue ruptures and eroded bones. Yet my conversations with my family are mostly about my ability and appearance. Sjogren’s is eating my teeth and my mother’s response was, “You need to get that fixed, you have to talk to people.” I went to a family reunion and couldn’t fold my laundry fast enough. I had two torn rotator cuffs and a fractured scapula. I wasn’t living up to the family standards and my level of disability was being ignored. I recently had autoimmune wasting and became the gossip of the family calls because I was “horrifyingly thin.”

Society doesn’t want to see what they consider “imperfection.” I get stares when I’m eating out because I can’t hold eating utensils right. When I attend meetings, I can’t get dressed in business attire. I’m one of the only people who will show up to a state legislator meeting in my pajamas, and they can’t hide the looks of horror. I have a handicapped placard and need help getting in and out of my car. That gets all sorts of fun gawks from onlookers. All this eats at my self-esteem and creates the conditions ripe for isolation. I want to hide. I don’t want to go out. It’s too much to deal with. I don’t want to talk to healthy people and constantly have to explain that I’m being eaten by multiple diseases and no it isn’t contagious. I don’t want to go to evening parties when my dystonia is in full swing and it’s hard to breathe. Knowing people are uncomfortable seeing your very existence is a hard pill to swallow. But, you know what?  Screw that. I’ve always been a stubborn horse’s arse who likes to cause trouble.

After over four decades of being chronically ill, I’ve found a couple ways to cope with all those desires to isolate and reduce my worth. I passionately believe that courage and strength doesn’t come from society’s idea of “overcoming your disability.” That translates to “pretend you aren’t disabled so we can say how inspiring you are.”

Forget that malarkey.

Real strength and courage comes from allowing yourself to be vulnerable. It means not always being positive. It means daring to be seen in our most vulnerable moments and sharing our stories. It means daring to be human and not accepting being “lesser than.” We are all different, but here are some things I’ve learned along the way that help keep me stubborn.

1. Don’t hide.

Anyone living in a Western culture, lives under the specter of absolutes. There is a specific way to look, a concrete idea of what success is, an absolute way to think spiritually, and an unwavering definition of health. When we stop fitting those definitions, we become embarrassed and hide. We tell ourselves we have no value – that we aren’t human. We don’t deserve friends, don’t deserve happiness, and we are burdens. Society reinforces these absurd concepts, and we let them. Stop hiding. The more we hide, the more we believe these ridiculous statements.

Guess what? You are still human. You still have value. You deserve to be loved and to be seen in society just the same as our able-bodied humans. A human is a human is a human. Don’t believe me? Look into how 504 and the Americans with Disabilities Act was passed. So many amazing humans with such diverse disabilities came together and dared to be seen. They helped each other and caused a revolution in accessibility and inclusion rights. When we allow ourselves to be seen in our vulnerable moments, it helps give our fellow humans the courage to do the same.

2. Accept your mortality sooner rather than later.

Yeah, it sucks. All are mortal and everyone gets to the end of their journey whether by illness, accident, or age. We spend so much time scrambling for a solution to our death problem, and it comes to all of us. Sometimes we reach the end of what medicine can offer. Sometimes there is nothing left to try and nothing more that can be done. Sometimes there is no “why.” Society tells us that medicine has a cure for everything, we aren’t eating enough kale, or maybe we need more hot yoga sessions. After that, we’ll all be cured, right? It’s great when we find a combo that works, and we get relief. I’m in no way saying to stop seeking care or trying things. Just don’t obsess over it and become attached to a cure for things that are most often incurable. This plays into the idea that we aren’t trying hard enough else we’d all be cured. This is a dangerous mindset and causes so much despair and depression. It eats at the very fabric that is our humanness and makes us genuinely believe we are lesser because we have disabilities. Don’t buy the bullcrap. Always try for improvement, but don’t obsess over your mortality. No one makes it out of here alive so don’t forget to live. Understand that accepting your limitations doesn’t equal giving up. It just means living your life free from the mental burden of not being “enough.” You are perfect as you are, disability and all.

3. Grow your friends who have chronic conditions, and not just the one(s) you have.

We often lament the loss of friends when we get sick or become limited. Make new friends. There are thousands of us. Thousands. Get to know your community. Dare to venture out of your own disability or illness. Allow this to teach you grace and compassion. We often get wrapped up in our truths and start to believe these are absolute truths.  Meet people with epilepsy, arthritiscerebral palsy, traumatic brain injury, mental illness, spina bifida, etc. There’s so much diversity to choose from, and you know what? You’ll get your self-esteem and humanness back. You’ll see so many people going through similar struggles, being vulnerable, and still persevering. You’ll come to love these other humans and realize they love you too. You’ll start to believe you deserve that love and to be treated as a human. Just a plain human, no conditions. Suddenly, you’ll find yourself filled with friends and you’ve become stronger. We truly can move mountains when we stick together. I’ve seen it happen. Dare to be seen. Dare to love yourself. Dare to be human. Dare to be imperfectly perfect.

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Originally published: May 1, 2021
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