Many of us know, or learn, through experience, that most of our friends disappear when chronic illnesses, take over and last forever… thus making it a, “chronic illness”, right?

This is sick life, in the United States, anyway. People don’t want to hear about it anymore, “you’re always complaining”, you don’t, “follow through”, despite best efforts, your friend remains miserable, no matter what you do to accommodate them. It’s obnoxious, and they’re obviously, “out of line”, easiest just to move on from the, “drama”.

Only thing is… as a sick person, our drama is nonstop. It literally, never stops. If we find ourselves having energy, we go for it! Packing in, as many things as possible, while that sweet moment of reprieve has entered. We are, “doomsday preppers”, we’re always preparing for bad days, flare days, fatigue days, all of the above, days. Always.

Recently, my friend from Brazil was here, for about 5 months. He stayed with me part of the time, in my daughter’s empty bedroom, as she’s in her first year of college.

On his last day, I was expressing to him, how lucky I felt to have one remaining, American, friend. And he finally let it out…

He said, “I’m sorry… I don’t want to offend you. But… why? Why are Americans so cold?”

I was taken by surprise… kinda…

It’s been something I’ve been keenly aware of, but to hear my friend say these things, he included this… “in my country, our friends are our friends always, unless they do something bad. If they’re sick, of course they complain, of course they’re different, but they’re sick. I don’t understand why this is difficult for Americans? They aren’t the ones suffering with illnesses”.

I wanted to cry.

He is a kind and dear friend. He was very thoughtful of all my needs and helped however he could.

There’s a stark reality he left me with. Because it’s mostly been my Brazilian friends who reach out to me. Majority of my American friends have stopped.

A third world way of life in contrast to the privileged first world way of life.

Culture shock

There’s an understanding that sick people are uncomfortable. That they still want to participate in life, but it’s more difficult, especially without any support, and wanting to have some autonomy, (that thing we develop as teenagers, and claim as adults), but lose as a chronically ill person, especially if it’s a disabling and debilitating illness.

I’ve had people say to me, “I didn’t leave because you’re sick, I left because you’re grumpy or complaining or too tired”.

“You’re too much”

it’s something I hear, too often… and yes, it hurts.

I didn’t choose this. Most people in other countries understand this… why not Americans? We’re all struggling with something. If it’s obvious, we try to meet our loved ones, where they need to be met. But we expect, a LOT. Get over it, you’ve been grieving too long, let it go… it’s all so easy to say, unless it’s your process.

That’s privilege. It’s toxic privilege. And it’s the culture of this country.

We have so much available to us… down to the ability to pay for a cup of coffee with our phones, a wealth of knowledge and information.

I even tried asking my, “loved ones”, please think of me as someone who’s been possessed, I’m still in here. I may be having a severe flare, I may be in pain, I may be experiencing severe side effects of medications. I’m not taking Tylenol, I’m on hardcore biologics, I’m in drug trials, my illness are rare.

Rare illnesses mean, rare doctors, rate treatments, unknown side effects, unknown symptoms. If we don’t know it, but are experiencing it, how do we find language for it?

The communication between myself, an American who’s first language is English and my friend from Brazil, who’s first language is Portuguese, is easier, because he doesn’t understand my diseases, but he understands that I’m sick, so I’m not the same person who could drop everything, and do a road trip, travel the country, the world even. He understood that caring for myself was resting, watching shows and trying to get nutrition. Just bed to sofa, then back to bed, life.

He understands my mind is different, my energy is different my ability is different. He still loves me, just as I am, despite who I was, which was considerably more fun, than who I am now. That’s love, that’s friendship.

Same language, not required

The picture of ability and health

Forever grateful for my friend who stayed