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What It's Like to Live With an Incurable Condition

The other night I got a Facebook message from a guy I had slept with roughly three years ago, around 3 a.m.

You know, the usual “hey, lookin good…” message which always means so much more than it says.

I didn’t reply at first.

He decided to follow his message up with a “Hope you’re good.”

To which I finally replied, “Thanks! You too. Merry Christmas.”

He said, “We used to hang out and have fun… You were great… Etc…”

This went on for some time, until I realized what he was talking about. I had just put up an article of mine from The Mighty on Facebook for the first time in a long time, and I guessed maybe he had seen it.

He asked if I was OK. He asked when I would get better.

I laughed.

I laughed because this is that moment you always run into with chronic illness, that one when other people realize you don’t get better, and it’s almost comical. Then I thought maybe I had somehow really upset him, seeing him send another message, one saying, “So you’re still sick?”

And I felt really saddened by his concern, but also laughed, thinking to myself, this poor guy, who was actually really cute, and I did really have a thing for him (but not the other way around it had seemed), and here I am having to explain to him about not getting better – when why can’t it just be flirting? The whole situation was just comical. He cared now? 

I said, “There is no cure for what I have. I was sick when I met you, too,” as in, I’ve been sick all along: I’m sick right now, was sick then and what is to come, that land will also be filled with being sick. Just a whole big stream of sick.

“Damn,” he said, and we left it at that. It was late, and though I wondered whether I should message him about “not looking sick” and about how I have an invisible illness, I figured it wouldn’t have made all that much sense anyway, and just let it be.

I sat back in my chair giggling – thinking, it just goes to show you that some girls have sexy late night chats with boys who are drunk and who slide into their DM’s, and here I am, explaining away my lifelong illness and thinking about how I don’t look “sick enough to have one.”

Those of you who have chronic illness will likely relate to this.

See for me, this is just one of the recent ways I’ve experienced what it’s like to have an incurable illness: that moment, at 3 a.m., when I excitedly checked my inbox to see why this hot guy was messaging me, only to find out he wanted to know if I was still sick. 

This is what it’s like having a lifelong illness:

Spending Christmas in bed because you don’t have the energy to get out of it, or the energy you do have you wasted at Christmas lunch, or walking down the stairs to the lunch, or getting dressed for the lunch, and then having had a seizure the day before Christmas, and chemo the day before that, and everyone keeps saying I’ll see a new doctor and finally get some good treatment and get better at last…

But there is no “at last,” because really, it’s a lifelong thing.

All the other Christmases will probably be like this one too.

It’s trying treatment after treatment in hopes of something finally working, because you never really lose hope that you will get better, even though it’s an incurable illness – no matter what people say about that – and then each time, you are dismally crushed when something doesn’t work and you are faced with the same prospects of the life you have been handed.

It’s getting ready to see doctors like you are getting ready for a new Bumble date, hopes high as a skyscraper that they will have some new unearthed mystical answer you haven’t yet seen or heard of – going to bed, eyes shut tight, hoping that tomorrow, the pain will end, tomorrow, the end will come, only to find out it isn’t the end, and they don’t have the answer.

It’s making the decision, far too often, to keep on living in the face of all that’s against you. To accept the reality that this is actually your life. To put one foot in front of the other when you can barely even stand on that foot to begin with. To keep trying regardless of how much energy or strength you have left.

It’s all of these things; having a lifelong condition is all of these things and more.

It’s being constantly asked how you got sick. When you will be better. Why you don’t have more energy, or when you will have some, as though you should have the answer for that, or as though you are a doctor, the doctor who, let’s say, cured the condition and could suddenly produce energy and wellness for a person such as yourself.

It’s being asked that at 3 a.m. by a drunk guy you slept with three years ago who will never talk to you again after that.

It’s being asked those questions by the people who don’t just know you the least, but also those who know you best, those people like your family – because they want most of all not to believe that it’s a lifelong condition. My mother tells me all the time that I’m going to get better, that we’ll try another doctor.

Having a lifelong condition means dealing with the fact that your life is not your own anymore; it means living with the uncertainties of illness at all times.

It took me six years to finish university because of my illness, and now, since my diagnosis, things like making plans or responding to that wedding invitation in my inbox are all things I’m never really sure how to tackle, because my body isn’t something I can rely on like other people can, and the lifelong part of my illness means I’ll never really be able to again like other people can or do.

This is because of the fact that flares can happen at anytime, and they remind me just how little a role I play in my illness
whenever they pop up.
 Flares are painful, because each time they occur, I lose the progress I made while I was feeling better. I will recover, take five steps forward, have a flare, and then take 10 back. I can be feeling better, and invincible, like my illness will never touch me again, and then out of nowhere, it will hit, and I am reminded just how little control I have over the whole thing.

It is like drowning, being thrown a rope to get out of the water, and catching it for a second, maybe even swimming towards the boat, you may even get a hand onto the ledge, and then losing your grip, and then you are back underwater, gasping for air, and have to start all over again – essentially treading water, hoping for a boat to come. You may even see one in the distance go by, a boat that’s like a treatment which may “work,” but it never does.

Certainly, lifelong illnesses and conditions can have their bright sides. But they also, when we allow ourselves to feel the pain of it and actually acknowledge the truth of the matter, see just how much damage can be caused by them.

One in 10 suicides is linked to a chronic illness; this is not a coincidence.

On a daily basis, I experience the choice of wanting to continue on in spite of all odds or whatever challenges I am being faced with because of my illness, and knowing I will have to face that for the rest of my life. That if I make the choice to keep going, I am doing so knowing things may not or will not improve.

We call ourselves chronic illness warriors because we are

We are brave soldiers in a war where every day we fight against all odds in a battle that is stacked against us and where we are mostly always losing.

This is what it’s like to have a lifelong chronic illness. This. All of this. And more.

And I am just one voice in this battle, and this is many people’s story.  

Lifelong illness is a story of loss, of pain, of heartache, of strength, of laughter and, most of all, of courage. 

I should end this by writing a message about how beautiful it can be to be sick, or how incurable illness is inspiring, but I believe this photo quote does a good job of addressing those things:

Follow this journey on Twenty Something and Sick.

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Photo via ty4ina on Getty Images

Originally published: December 29, 2017
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