Medical Uncertainly: Waiting For A Chronic Illness Diagnosis

The Waiting Game: When Life Feels Like an Auction You Can’t Control

On Tuesday morning, my husband and I sat in front of our computer, hearts pounding, fingers hovering over the keyboard. We were bidding at an auction for a flat in the city where our son is studying at university. It was the perfect place—close to campus, safe, and something we could invest in for the future.

Each time we entered a bid, a surge of adrenaline rushed through us. Would we win? Would we be outbid? The tension built as the numbers on the screen climbed ever higher. Just when we thought we might have it, another bid popped up. Higher. Just out of reach.

I wanted to be cautious. I weighed up the pros and cons. My husband, definately more of a risk-taker, always wants to go further. In the end he put in his maximum bid and stepped away from the screen, deciding to let fate take it’s course so that he didn’t end up bidding too much. We had agreed on our limit.

A few moments later, it was over. We had been outbid. The flat wasn’t ours.

It was a frustrating, a nerve-wracking experience (for me anyway!) One moment, we had hope. The next, it was gone. And as I sat there processing this, I realised, this is exactly what it feels like to be waiting for a chronic illness diagnosis.

The Agony of Medical Uncertainty

If you’ve ever sat in a doctor’s office, waiting for test results, you know the feeling. The tightness in your chest. The way time slows down. The fear of what’s coming next.

Like an auction, the process feels completely out of your hands. You show up. You answer questions. You endure endless tests. But the outcome? That’s up to someone else. Someone with more power, more knowledge, more control.

And sometimes, just like we were outbid today, you don’t get the outcome you wanted.

Maybe your test results are inconclusive, and you need more tests. Maybe you’re left in limbo, still searching for answers. Or maybe you do get a diagnosis—but it’s not the one you were hoping for. Instead of relief, you feel grief. Frustration. Fear.

For tips to manage feeling overwhelmed when you have a chronic condition check out this post How To Cope When You Are Overwhelmed By Your Chronic Illness Diagnosis.

The Weight of Not Knowing Your Chronic Illness Diagnosis

Living with a chronic illness often means living in this state of uncertainty. You’re waiting for doctors to figure things out. Waiting for the next appointment. Waiting for a treatment that actually helps. And all the while, life keeps moving forward, but you feel stuck.

This week I have coached two women, both at totally different stages of their life, both with totally different conditions affecting their health. The feelings, they are the same – frustration, uncertainty, fear. The frustrations navigating the health services, same.

I remember when Alfie, my oldest child, was at his poorest with ME, at this point totally bed bound. In some ways we were really fortunate to get a referral to a specialist fatigue centre within such a short space of time for a potential diagnosis. Six months was quick, that was in part due to how unwell he was and how professional I was at knocking on the right doors. I remember the feelings I had, ALL my hopes were pinned on that appointment. I didn’t care so much that they put a name to his symptoms but I wanted a label so that we could finally access support, treatment, and a plan to make him better.

That did not happen. With so many chronic conditions the best we can achieve is getting to a centre to help us to manage symptoms. The wait to get better continues.

I see so many women in my coaching practice who are exhausted by this endless waiting. They feel powerless, like they’re watching their lives unfold from the sidelines, unable to take action. And that’s the hardest part, because we want control. We want to know what’s happening. We want certainty.

Why Acceptance Is So Important When You Have A Chronic Illness is a great read to give you the steps so that you can begin to take back that control.

Taking Back Your Power

Here’s what I’ve learned, from my own experiences, from supporting women through their health journeys and navigating my family through theirs… while you may not have control over your diagnosis, you do have control over how you navigate the uncertainty.

You can choose how you advocate for yourself. You can build a support system. You can create routines that help you feel grounded, even when everything else feels up in the air.

Most importantly, you can learn to trust yourself. Your intuition. Your resilience. Your ability to handle whatever comes next. Because whether it’s an auction or a diagnosis, the truth is: we will all face moments where we don’t get what we wanted. But that doesn’t mean we stop showing up. That doesn’t mean we stop hoping.

So, if you’re in that waiting room, whether literal or metaphorical, know this: you are not alone. And no matter what happens next, you are strong enough to handle it.

If this resonates with you, I’d love to support you on your journey. My coaching services are designed to help women like you navigate the ups and downs of chronic illness with more confidence and clarity. Because while we may not get to choose every outcome, we can choose how we move forward.

Let’s chat

If you want to talk about how life and chronic illness coaching could support you to manage uncertainty while waiting for a chronic illness diagnosis – so that you can live well and achieve more. Then get in touch.

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