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Adapting to a World That Doesn't Care About My Illness

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​Consideration means careful thought. Some synonyms are “thought,” “deliberation,” “meditation” and “reflection.” Basically, think before you act or speak. As a person with multiple chronic illnesses, I am constantly adapting to a world that won’t adapt to me.

The world doesn’t care how I feel. It doesn’t care that my mind doesn’t function at the same pace as it used to, or at the same pace as someone without multiple sclerosis. It doesn’t care that I have periods of time where I can’t find the right word for the right situation. It doesn’t care about timing, because this word loss always seems to happen at the most inappropriate time.

The world doesn’t care that I got what should be enough sleep, but still feel like I haven’t slept in decades. It doesn’t care that most of the time I don’t sleep more than an hour or two at a time, and that some nights I don’t sleep at all. The world isn’t going to stop just because I’m in pain or tired, as much as I wish it would at least slow down a little.

Nope, it just flat-out refuses, and I’ve wished really hard. The world works on a 9 to 5 schedule, Monday through Friday, and it doesn’t care that my schedule, my body, doesn’t follow that pattern.

I have to talk my exhausted, pain-filled body into working with a schedule that doesn’t suit it, and sometimes it just can’t. I can’t always do it. There are times I have to shut out the world — the world that isn’t considerate of my needs. Do I expect the world to cater to me because of my less-than-stellar health? No. Of course not. I do expect the world not to be so cruel.

I was hoping everything wouldn’t be so hard. I was hoping it wouldn’t be so hard to get the healthcare I need — not always fighting with insurance companies or doctor’s offices. I didn’t want to have to struggle with my job. I want them to understand it’s not me who is unreliable, it’s my health.

I’d give just about anything to be pain-free for even an hour. I want the Ellie I used to be back. Before all of this pain. Before I was so sick. But there isn’t an old Ellie and a new Ellie. There’s just Ellie. The Ellie that doesn’t have filters and usually says the things you think she won’t say. The Ellie that can go on, passionately, about anything and nothing, all at once.

I’m just Ellie, and I want the world to be easier. I feel like I unwillingly signed up for the fight of my life, and I’m not a fighter. I’m a peace lover. If I have to fight, I will, and when I’m pushed to fight, I win. I do think the world would be easier if we were all more considerate. Can’t we all just get along? Stop the fighting.

Originally published: July 18, 2016
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