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When People Think There Is No In-Between Being Healthy and Dying

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There is no in between. People expect me to be on my deathbed crying from pain, or they expect me to be happy and energetic. The truth is, the majority of my days are a grey in between, where I struggle with managing pain, mental illness, and low energy in the least visible way possible. Most of my energy is spent on these days on disguising my illness from loved ones, strangers, and everyone in between.

Every once in a while however, I have to ask myself, why do I hide the fact that when it rains I have a limp, or my hands shake most of the time, or when I am in extreme pain and walking up one flight of stairs is an impossible task?

For me, it comes down to a complex tangle of self-pride, embarrassment, and stubbornness. Above all of that however, is the realization that the vast majority of the times I mention a challenge I am experiencing that day when it isn’t life-threatening (and sometimes when it might be), it is met with irritation, as if mentioning I would prefer to take the elevator was an embarrassing cry for attention.

I have been told that I have dealt with my illness long enough so I should be able to “handle it by myself,” as if asking for help on a bad day is me actively seeking some sort of extra attention rather than merely trying to make the struggle through the day a little bit easier. This is not something I alone feel. So many people I know personally who struggle with chronic illness have been met with irritation when their illness doesn’t just go away after a few months.

For the most part, the chronic illnesses I have aren’t curable. They are manageable, and maybe remission is even possible, however they will never leave my body. From now until the day I die I will have some form of reminder of chronic illness, whether it is from biopsy and treatment scars .or symptoms. I am not dying from them currently, and I may never die from a direct complication of my diseases. I am however, living with these illnesses.

The preconceived notions that most people have of chronic illness means that when I do have a high energy day where I am able to act fairly normally, many people react as if I have been cured. Then there is a resulting disappointment when, even perhaps the next day, I’ve crashed into a flare, unable to perform the way that I did just the day before. Wellness of being is constantly in flux for healthy people, so why is it not the case for chronically ill people?

It has gotten easier to manage the expectations of others versus the reality of my condition. Through cultivating a support system that is, for the most part, without judgement, I have been able to set aside the accusations others cast upon me and realize the value of having people close to me who I can rely on.

Originally published: June 12, 2018
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