Why I Remain Hopeful When My Health Is Uncertain

No one likes uncertainty, no one I know anyway. One of the most difficult things I have found about living with the chronic illness myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is the vast uncertainty.

The symptoms are bad of course: debilitating fatigue, brain fog, pain, flu-like symptoms. There’s also depression, anxiety and loss of quality of life – which is the result of living with long-term illness. But the hardest thing for me is not knowing what the future holds. It’s easier to bear something if you know when it will end. I don’t know how I’ll be tomorrow, let alone in a week, a month, a year, a decade…

I might get better, I hope I will. I might stay the same, a thought that is intolerable to me. I might even get worse. This has already happened to me over the course of my illness. I simply don’t know, and the doctors don’t either. Whilst, perhaps, I have some control over my condition, it often seems completely out of my hands. Change happens so slowly, and a bad night’s sleep, a virus, or stress can set me back weeks, months, or I don’t know how long.

But amidst all of this, a thought occurred to me, “Where there is uncertainty, there is hope.” In a way I’m lucky my illness is so uncertain. If you think of someone with a late-stage disease doctors agree is untreatable, there may not be much uncertainty, and thus there is not much hope for recovery. In my case though, I’m up to my neck in uncertainty.

This drowning in uncertainty feels different if, instead, you look at it as hope. Whilst there is no effective treatment for ME/CFS available in the UK, and there is no cure, it can be hard to feel hopeful – but many people do improve, or even recover. I believe it is this hope that enables those who are struggling of this horrible illness to wake up every day and face the world they live in.

I would like to point out, however, that sadly many people with ME/CFS also don’t recover. This is what makes the uncertainty so hard. I’ve had many, well-meaning people tell me that I will recover from this illness, as their knowledge is that ME/CFS is always, or often recoverable. I know it is said with good intentions, but I find it hard to hear, and feel it diminishes what I am dealing with, as it is not the truth I know from speaking to many people with ME/CFS who have been ill for decades, and for whom recovery seems impossible.

There is always uncertainty however, and thus there is always hope. Wherever you are in your life right now, whatever struggles and uncertainties you are facing, if you can adjust your thinking and see the hope in the uncertainty, your world will feel brighter.

We want to hear your story. Become a Mighty contributor here.

Thinkstock Image By: va103

Find this story helpful? Share it with someone you care about.

Related to Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

The writer laying on her couch with a cup of tea in her hand, and her cat sitting on her lap.

Need to Simplify Your Work Due to an Illness? Here Are 5 Ways to Help.

I had a conversation this week where we discussed what seems to be a shame around doing less or simplifying, especially for women. I know so many women with a martyr complex and I used to be exactly the same, and I still find myself doing it sometimes. It’s like I feel I have to help everyone, [...]
painting of two people holding hands

How My Mom Defended Me When Brain Fog Made Me Forget How Old I Was

We were standing in line at a casino entrance. I fumbled through my wallet to get my ID ready. My mom wanted to go for her 66th birthday, so here we were. We found ourselves at the front of the line in no time at all. I handed over my ID to the security guard [...]
woman with electrodes on her head from the film 'unrest'

What Happened When I Attended a Screening of 'Unrest'

“Unrest” follows the story of Jennifer Brea becoming ill with ME/CFS. The film goes so much farther beyond this narrative. It’s also a science lesson, moving love story, a tale on the adaptability of the human spirit and a call to action. This past spring I attended a screening for “Unrest” at the Ted Rogers Cinema in Toronto. Something powerfully transformative [...]
painting of a woman by the author

What It's Like to Experience the Isolation of Chronic Illness

Imagine being in a room – four walls, a ceiling and a floor. A barred window is on one wall. It’s just large enough to taste the outside world, yet small enough so you remain only a spectator. You notice an exit door on the opposite side. Above it, a red florescent sign glows the [...]