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When There Is Constant Pressure to Be Healthy

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There is always this question on patient health history questionnaires. It’s phrased somewhere along the lines of, “How would you rate your health?” Included are responses such as good, fair and poor. I always circled good.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

It was always subtle denial and desperation where I could imagine I was still healthy. I would always make these ridiculous allowances and exceptions. Whenever the topic of health came up, I’d ruminate on how I was fortunate to have such a good immune system, how I’ve only been severely ill twice in my whole life – barring my genetic disorders, of course. I would assure myself and those around me about how I was actually healthy because I ate pretty well, I was relatively active when I was able – you know, besides my genetic disorders. Those didn’t count. I was healthy in the normal person way…Well, except for those two brain surgeries, except for the time I almost died. “Those don’t count,” I would stress repeatedly.

This constant pressure to be healthy is unrealistic and dangerous. But I’m sure there are folks assuming I need to take personal responsibility for this pressure, that I just need to cope and do better. I’m going to learn y’all a couple things real quick. I cannot take personal responsibility for people constantly telling me my pain meds are making me sicker (they aren’t), for people telling me my diet is wrong (it’s not), telling me I should be doing downward dog 24/7, and if I just went all natural, everything would get better. That is not how any of this works. Even so, don’t you think I’ve already done all of those things? I’m doing those things every day because healthy, abled people won’t stop telling me how I need to exist and how to be healthy, as though my genetic disorders are personal failures. I’m doing those things every day while constantly insisting I’m not really sick, I’m actually healthy.

It is unrealistic to assume that after receiving those messages every day for my entire life that I wouldn’t be stuck with denial and a sick desperation to be healthy. The pressure is so pervasive that I am not even allowed to be angry at healthy people shaming me for literally everything I do as a sick person. I have to take responsibility for believing the lies about health, value and worth that were sewn into the fabric of my culture, despite being only 25. I didn’t ask for this world, this culture, or this way of life. I didn’t ask for any of this.

I have to take time out of my disabled day to teach healthy people not to say and do these things. If I don’t, I am shamed for not taking personal responsibility. I am blamed for a world I did not build. I don’t have the right to acknowledge the pressure to be healthy or be angry about the weight of it, if I don’t make an effort to teach people who patronize me, who shame my entire existence without context – because I know better and they don’t. If I just took the time, I could make them understand – never mind that my time is occupied by weekly appointments, falling apart at the seams, chronic pain and adult responsibilities like work, chores and more.

But I digress. I am not in fact healthy. I have Ehlers-Danlos syndrome, hypokalemic periodic paralysis and an almost hilarious laundry list of comorbidities. I will never be healthy. It will be a constant battle of fine-tuning my treatments, managing my symptoms and quality of life.

This sudden awareness of my own denial and desperation came from some recent test results that shed a new light to some of my symptoms. By all metrics, I was doing everything right diet and exercise-wise, given my limitations, and yet it didn’t matter. Because that’s what being chronically ill means. That’s what having a genetic disorder means. That’s how this is.

It became real to me that I can’t keep making allowances so healthy people would accept me as worthy and so they would stop intruding on personal life-altering decisions without the critical knowledge or experience necessary. I can’t pretend to be anything other than sick anymore. It wouldn’t be the responsible or healthy choice.

Getty Image by MangoStar_Studio

Originally published: March 15, 2018
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