Share a story – Eliza Charley

Redefining hope in 2025

“How do you find the strength and hope to keep going?” The request suddenly blinked up in the middle of a Q&A on my instagram. My fingers fell short of the screen as I reached to reply. How do I tell them the answer? I hesitated. Because if I’m being honest… sometimes I don’t.

I’ve had a complex relationship with hope. That feeling of holding on to a vision of a brighter future while facing hardship in the present is something I’ve sought and very much needed. Indeed, hope has often been a great comfort, yet it has also been a source of heartbreak.

Burning through the resource of hope

Too many have tried to sugar-coat the grim realities of Myalgic Encephalomyelitis (ME). In my experience, ME has been a disease that can quickly and slowly take your health, then your livelihood, your connection to society, and even your last means of expressing your identity. The endurance required to survive something like that has been astonishing, especially with limited approved channels for treatment, support and management.

While facing a long-term physical battle – tough enough on its own-  patients have repeatedly come up against systemic barriers and social disdain, both of which have been perpetuated by pervasive misinformation and harmful ideology. And yet I have survived all of my darkest days so far and I have discovered an inner strength to persist… but I don’t feel it all the time.

Through the twisted turns of ME, hope has been a concept I’ve frequently relied on –  and a resource I’ve burned through. At times it’s been a roaring bonfire fuelled by a research breakthrough, policy advancement or finally getting to the top of a medical waiting list. Other times, it’s been a tiny, vulnerable, smoldering glint, like the last glow of charcoal embers, which could be fanned back into a flame anytime with the right resources, but it could also be smothered by one more chilly blast.

Personally and collectively, there have been as many hopeful hills we’ve climbed that have disappeared into a mirage, as those that did become steps toward a better future. How can I keep espousing the importance of hope when so often it can feel like nothing changes?

When hope let go of me

On an old instagram account named “Hope Heroes Co” I used to write about “hope for better”: Better understanding, better support, better research. And although my heart was in the right place, this choice of optimism became harder to reconcile with the ongoing tragedies I was witnessing in the global patient community.

The turning point for me came in 2021. I was six months into a relapse of ME following surgery and had yet again lost work, ability, plans and dreams. Initially I’d remained hopeful things would resolve ‘soon’. With each month passing, I felt reversing my trajectory would surely be just around the corner; or the next corner… or maybe the next. After all, a decade of biomedical research and political advocacy had passed and was starting to bear considerable fruit.

It was 12 years since I’d first contracted ME following a virus in 2009. I had high hopes that help should be readily available and though my strength was waning I could hold on a little longer. Even if we didn’t have all the answers, we’d all learned so much, or so I thought.

Imagine my surprise then, when I encountered the harmful ideologies of yesteryear, only now they were seemingly more entrenched in the Australian healthcare system than ever.

With shock I was hit by my own naivety. I’d mistakenly assumed that healthcare practice had been keeping step with crucial breakthroughs like ditching Graded Exercise Therapy, or at least that they would have done away with the erroneous habit of patient-blaming and psychologisation. I was wrong and it broke my heart.

To add insult to injury, I was frequently being told to ‘have hope’ by the very same people who had more power, more expertise, and more capacity to take actions that could have tilted my future towards a more hopeful one. When hope was wishful thinking, it was leading to apathy. People in a position to create pathways to a better future were wishing us to ‘hang in there’ and ‘get well soon’ while smiling and waving and turning away from us.

I let go of that kind of hope, or perhaps hope let go of me.

If not hope, then what?

I stared at the Q&A box on my phone, still pondering if I had anything of value to say. There was no doubt in my mind that strength and hope remained important to this journey, but these inner resources alone could not change what the future would look like. We are living through the middle of a story still being written. Hope helps us to picture what the ending could look like and strength helps us to believe that it might be possible, but neither changes what’s written on the last page. Only one thing can do that: Action.

People with ME have acted. Despite being underpowered by the very nature of this disease, we have endeavoured politically, scientifically, socially, creatively, and legally, to shift the needle towards a better future.

We have chosen to believe that the harm inflicted on us as the status quo does not have to be carried through to the next generation. And many brilliant allies have joined the cause. There has been important work completed in research, advocacy, support, fundraising, and awareness. Our efforts have made a difference, but they’ve also worn us down. We’ve done our best to rally for reinforcements. Dare we hope that 2025 is the year the cavalry is coming?

“How do you find the strength and hope to keep going?” I decided to be honest. “Sometimes I don’t. I let myself sit with the pain. I lean into the swings between acceptance, and advocating for better; adapting to the present, while advocating for a better tomorrow. And on the days I can’t hold hope for myself, I ask others to hold hope for me instead.”

 

Eliza Charley

Website: www.elizacharley.com

Instagram: @ElizaCharley

Twitter/X: @ElizaCharley

BSky: @elizacharley.bsky.social

GoFundMe: https://www.gofundme.com/manage/help-eliza-access-new-critical-round-of-apheresis-treatment