"The myth of getting better." What no one says out loud about living with chronic illness.

It feels like I’ve been trying to get better my whole life.

I was trying to get better in primary school when I carried a small cooler pack of homeopathic remedies with me everywhere I went. And I was trying to get better in high school when a naturopath put me on a special diet and my mum and I tried to make our own gluten-free bagels and bread.

And I was trying to get better in my twenties when I rebuilt my life from the ground up in an effort to cure my terrible eczema and the crushing fatigue that was left in its wake.

WATCH: Sarah Wilson on why women burnout, get tired and sick. Post continues below.

In these and many other moments, I thought of my complaints as stubborn but not chronic. With each new protocol, I thought I was one step closer to getting better.

The great thing about trying to get better is that it lets you feel like you have some control over your circumstances, like you’re taking action about your health. The terrible thing about trying to get better is that it might not work, and nobody wants to admit that.

If your body has stopped working the way that you expect it to, then getting better is a worthy goal. And if your body keeps malfunctioning, you might find that a lot of people support you in that goal.

Your family wants you to get better and your friends want you to get better and your colleagues want you to get better. Sometimes it even feels like they’re all waiting for you to get better because it’s too uncomfortable or difficult to maintain a relationship with somebody so unwell. But what if you don’t?

In 2017, I became homebound, nearly bedbound. Most mornings, my husband would help me walk from the bed to the couch for a change of scenery, and he brought me all of my meals because I couldn’t physically prepare my own food.

I could barely read, let alone write, and so I’d put a procedural show on the television and close my eyes while somebody with a lot more cognitive function than I had gone about solving a mystery.

At that moment, my doctor couldn’t find anything wrong with me, and my body wasn’t capable of doing all of the research, planning, and labour required to follow Instagram’s latest wellness protocol. Without even realising it, I’d stopped trying to improve my health. And that was the first time I heard a whisper in my mind asking, what if I don’t get better?

 

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Trying to practice non-attachment this week, or something like that. I’ve got my first round of neurological tests and a cardiologist appointment. Plus, @zawdawg will be setting up his booth at Paradise City Arts Festival while I toodle around the medical campus in Springfield. . I’m doing so much better than I was in the moldy house, but sometimes my hands stop working. Sometimes my heart rate spikes as if I’m doing cardio when I’m just standing by the sink, getting a glass of water. Weird stuff happens. . It has been so much easier to get my doctors to take me seriously than it was two years ago. And this makes me really angry. I have fewer symptoms than I did then when my PCP refused to refer me to neurology or rheumatology. When she offered me antidepressants for my tremor and nerve pain and swollen joints. . So over the next couple weeks, I might get a new diagnosis. I might get a protocol and a prescription and a tidy story to explain all the weird stuff that my body is going through. But I also might not. In fact, it’s incredibly likely that I’ll get formal names for my symptoms (some of which I have already), without an underlying explanation. This happens all the time, but it’s barely represented in media. . I recently asked people on twitter how long it took to get a diagnosis after they first begun to think that something was seriously wrong. So far, I’ve received about 100 responses. I can count on one hand the number of people who reported their time in months instead of years. I am no longer surprised when people say it took 10 years, 20 years. I’m no longer surprised that so many people get a diagnosis without any real path to manage their symptoms. Medicine is complicated and we don’t know nearly as much as we think we do. We’re not that far from leeches. . Anyway, this is me. This week. I’m enjoying the sun and I’m working on my podcast and I’m getting lots of tests done that might change everything or nothing. . . . . . #chronicillness #chronicpain #spoonie #invisibleillness #spoonielife #dysautonomia #chronicallyill #disability #butyoudontlooksick #pots #posturalorthostatictachycardiasyndrome #fatigue

A post shared by Brianne Benness (@bennessb) on May 20, 2019 at 7:11am PDT

This question is so, so hard to reckon with. When I tried to share that whisper with other people, they seemed to have trouble reckoning with it, too. People would say, “You don’t know what the future will bring!” or “Don’t say that!” or “Have you tried…?” Anything to avoid engaging my grief.

I learned not to talk about it with other people, but I still didn’t know how to reconcile a lifetime of trying to get better with my current life on our couch.

I didn’t have a diagnosis and I didn’t have a plan and I didn’t know that not getting better was even an option. I’d never heard of anybody who got so sick they had to leave their life behind and then… just kept living like that. I’d never heard of anybody who stopped trying to get better but still survived.

And what did it say about me that I was entertaining these thoughts? Had I given up? Did I just want to keep living in my small new world where my husband waited on me hand and foot? Was I choosing to stay sick because of the secondary gains? What would we do if this really was my new normal?

Now here’s the part in the mystery where we got very very lucky: We found out that there was toxic mould in our house, and it was the explanation for my rapid decline. With help from family, we were able to move into a mould-free home. After a few months, I could read again. Sometimes, I prepared my own food.

I could walk long distances without support, and my brain began to work the way it used to. My friends and family were elated that I was getting better. I was elated too, and I couldn’t wait for my life to get back to normal. But it didn’t. Over the last two years, I’ve had great months when I could trust my brain and body to behave as expected for at least eight hours a day as long as I gave them enough rest. And I’ve spent weeks in bed reading or listening to romance novels, trying fervently to believe that my energy levels would stabilise again.

I’ve learned that if I try to push my body past its limits for more than three days, I will disintegrate into a shaky heap that needs help getting back to bed. I have become hyper-vigilant, constantly scanning my body for early signs of collapse.

I’m better than I was in that mouldy house, but I’m not better in the way that I’d always used the term. I’m not well.

And so now that whisper—what if I don’t get better?—is much louder. And I know from speaking to other people living with chronic illness that I’m not the only one trying to reckon with this question. And I also know that there are better questions to ask.

Mia Freedman spoke to Sylvia Freedman about what life is like living with a chronic illness in the episode of the No Filter podcast below. Post continues after audio.

Instead of a lunch box of remedies or homemade gluten-free bagels or a full life makeover, I’ve started wondering what little things I can do to make my functional periods even longer. And instead of thinking that my life is over whenever I’m stuck in bed, I’ve started to wonder if maybe I can find a way to accept that time as part of my life right now.

The people around you want you to get better because they want you to be happy, but sometimes it doesn’t work that way. But I wish I’d known much sooner that getting better wasn’t guaranteed or even required.

I wish I’d known it when I was a kid who needed much more rest than the other kids at school.

I wish I’d known it when I was wracked with guilt after backing out of New Year’s Eve plans with the man who would become my husband.

And I wish I’d known it when I moved my whole life from to a new city I thought would be more conducive to healing.

I wish I’d known that if you live with fatigue or pain, you might never get better and that’s not your fault. The people around you want you to get better because they want you to be happy, but sometimes it doesn’t work that way.

Sometimes you put all of your resources into trying to get better, and you find yourself feeling ashamed and guilty and hopeless and inadequate instead of feeling better. Sometimes trying to get better makes you feel much much worse.

But I also wish I’d known that you don’t have to get better to be happy.

You can find joy in your favourite characters and you can really, truly connect with people online who understand and you can let yourself off the hook just a little because you didn’t choose to get sick but you’re building the best life you can anyway.

Brianne Benness is a writer, editor, and the host of No End in Sight, a podcast about life with chronic illness. Brianne is also a co-founder of a monthly Toronto-based storytelling event called Stories We Don’t Tell, which recently published its first anthology of vulnerable stories about tough topics.