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To My New Husband, From Your Chronically Ill Wife

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We just signed a lease for an apartment. We have joint accounts for banking and utilities. I’m even taking your last name.

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We’ve been married about six weeks now, and as your job allows, you’ve been slowly moving your things from the big city to our small home in the suburbs. I’m excited for the upcoming day where home will finally be with me, and not a four hour’s drive away to Pittsburgh. Excited, but also terrified.

We met 14 months ago, and by now, you understand that my health is fragile. As talk of marriage arose, I sent you articles about my myriad of medical conditions. I tried to explain it, but words on paper are not the same as experiencing things in real life. And you are the epitome of health — 27 years old, muscular, strong, and incredibly active. As your new wife, I have some things I want you to know about what it’s going to be like living with me.

The first thing to note is that my pain is ever-present. It does not leave my body, even on the good days when I wake up with glowing skin and a perfect gait to my walk. It’s woven into every single layer of my being, into my skin, my muscles, my bones, and my nerves. Because of this, I am often exhausted, and I mean a special, agonizing kind of exhausted reserved specifically for the chronically ill.

I take a lot of naps.

Many mornings, I wake up late and many nights, I go to sleep early.

I take seven pills every morning, two pills every afternoon, and six pills every night.

Sometimes my head is so full of fog that I won’t even be able to see you clearly. I’ll hear you speaking to me, but you might have to repeat yourself a few times before I understand.

Walking is difficult for me and I stumble often — I’m even prone to the occasional fall.

Simple chores are difficult, like cleaning, cooking, or even making the bed.

Some days, my skin will ache so badly that the touch of your hands will cause me pain.

And I know you. You’re a fixer, and when you see me at my worst moments, you’re going to want to make me better. Understand that there is nothing that you can do; these problems are wired in my genes, and the only relief that I get is from supportive care. And that is something you can do.

If you look in my eyes, and the lively girl you know is absent, ask me what you can do. Bring me a blanket, or perhaps a cup of tea. Check on the food in the oven to make sure it’s not burnt. Empty the dishwasher so I don’t hurt myself lifting anything. Simply ask me how I’m doing.

You’ve told me on a couple occasions that God sent me to rescue you, which is what makes this last one so important. I will always be there to save you, but I will need you to do the same for me. If one of my illnesses flares to a point that you are worried for me, please get me my medicines. Call my mom. Call my doctors. Sit by my side and wait with me until it passes. Be my partner in the truest sense of the word.

On a sunny Sunday afternoon back in May, you promised me forever, in sickness and in health. Living with multiple chronic illnesses means that I’ll be cashing in on the first part more than I’d like to, but I can promise you this: on the days where I’m in good health, I promise to do all I can to make forever beautiful.

Getty Image by olegbreslavtsev

Originally published: June 26, 2018
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