Living with Uncertainty

There’s a strange kind of silence that follows the words “we don’t know.”

When your life is ruled by appointments, test results, and symptoms that seem to change overnight, uncertainty becomes a constant companion. You learn to live in a world where plans crumble easily, where good days arrive without warning and bad days linger without mercy.

Uncertainty isn’t just about the future, it’s about waking up and not knowing how your body will feel, how much you can do, or who you’ll be today. And somehow, you keep going.

This help guide isn’t here to tell you to “stay positive” or to “trust the process.” It’s here to hold you while you stand in the unknown, to help you build tiny anchors when the world feels unsteady, and to remind you that even in uncertainty, there can still be peace.

The Weight of the Unknown

Chronic illness brings with it a thousand question marks.

Will this treatment help? Will my pain ease? Will I ever get a proper diagnosis? What if things get worse?

It’s human to crave answers, our brains are wired for predictability. Yet with chronic illness, predictability is a luxury. The body doesn’t always follow the rules. One day, you can walk to the corner shop. The next, you can’t sit upright.

That unpredictability seeps into every part of life: relationships, work, travel, even rest. You find yourself holding your breath before every outing, wondering if your body will let you participate this time.

And yet, despite the fear, you still find a way to adapt. You learn new ways to live, even as your map keeps changing. That resilience, quiet, often unseen, is something extraordinary.

 

Reframing Uncertainty

We often see uncertainty as a threat, something to fight or control. But maybe it’s not the enemy we think it is. Maybe uncertainty is simply space, a blank page waiting to be written on.

When we stop demanding that life be certain, we begin to soften. We start noticing what is steady, what is within reach. It might be the comfort of a routine that grounds you, the kindness of a friend who checks in, or the quiet courage it takes to rest when you need to.

Living with uncertainty is not about giving up hope. It’s about learning to hold both, hope and not-knowing, in the same hand. You don’t have to have it all figured out to keep going. Sometimes, courage is just showing up, gently, without the full picture.

Finding Your Anchors

When the ground beneath you feels unsteady, you can still create anchors, small things that remind you you’re safe, even when everything else feels uncertain. An anchor might be a slow morning routine that starts with gratitude or journaling. It might be a playlist that calms your nervous system or a few deep breaths before opening another medical letter. Try creating a soft structure around your days, but leave room for flexibility. Rigid routines can lead to frustration; gentle rhythms create safety.

You might like to check out my “Bad Day” Survival Kit - a guide filled with small comforts for the hardest moments.

And if your nervous system feels constantly on high alert, try simple grounding techniques that help your body find stillness when uncertainty spikes.

Remember: you don’t have to build your anchors all at once. Start with one small ritual that helps you feel grounded, then add to it when you can.

Letting Go of Control

So much of chronic illness is out of your hands, appointments delayed, symptoms that defy explanation, systems that don’t always listen. The temptation to control what you can becomes overwhelming. But control is exhausting. It leaves no room for rest, and no space for grace.

Letting go doesn’t mean surrendering your power, it means trusting yourself to handle what comes next. It’s choosing not to carry what you can’t change.

Try this: next time your mind starts spinning with “what ifs,” gently ask yourself, what’s true right now? Focus on what’s here, not what might happen. The future can wait. If you find mindfulness or grounding helpful, my guide on Managing Healthcare Anxiety includes gentle exercises that can ease uncertainty, too.

Compassion in the In-Between

When you live in uncertainty, it’s easy to turn frustration inward, to blame yourself for being unreliable, inconsistent, or not coping as well as others think you should. But uncertainty isn’t your fault. You’re adapting to circumstances most people will never have to face.

Self-compassion is one of the strongest tools you have. It means speaking to yourself as you would a dear friend: with softness, patience, and understanding. If you need a reminder, write this somewhere you can see it: “Even here, in the waiting, I am enough.” You can’t rush clarity, and you don’t have to earn rest.

Connecting Through Uncertainty

Isolation can make uncertainty heavier. When you’re unsure how you’ll feel day to day, it’s easy to withdraw, to stop making plans, to stop talking about what’s hard.

But connection, even in small doses, helps. It doesn’t erase uncertainty, but it gives it context. When someone listens and says, “me too,” the unknown feels less lonely.

If you’re craving community, my support group “Finding Happiness, Together” is a safe space to connect with others navigating chronic illness. We share experiences, coping tools, and gentle encouragement for the days when you need reminding you’re not alone. You can find out more information and book your place here.

You can also join our monthly newsletter to stay connected with our Facebook community, receive support updates, and be the first to hear about upcoming sessions and new help guides.

 

Learning to Live in the Grey

So much of chronic illness life happens in the in-between, between tests, between flare-ups, between progress and setbacks. The world teaches us to crave black-and-white answers: better or worse, sick or healthy, strong or weak. But your truth lives in the grey. Learning to live there, in the uncertainty, the changing tides, is an act of deep resilience.

Maybe you’ll never have all the answers. Maybe your body will always be a little unpredictable. But within that unpredictability, you’re still living. You’re still laughing, connecting, loving, and growing. That’s what matters most.

 

A Closing Thought

When life feels uncertain, come back to this truth: You have navigated every unknown you’ve ever faced.

You are stronger than you realise, softer than you give yourself credit for, and more equipped than you think.

Uncertainty will always be part of life with chronic illness, but it doesn’t have to be the enemy. With anchors, compassion, and community, it can become something else entirely: a teacher, a mirror, a space for transformation.

So take a breath. Release what you can’t control. And remember that even when the path disappears, you still know how to walk.

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Thank you for taking the time to read my blog and visit my website, it truly means the world to me. If it offered comfort, or helped you feel even a little less alone, I hope you’ll stay close.

You’re warmly invited to subscribe to my Monthly Newsletter, a gentle space of encouragement, latest help guides, community updates and product recommendations. You’re also welcome to join our Support Group “Finding Happiness, Together”, or connect with others through our Facebook Community, to be part of the conversation with others that truly understand. If you’re able to, a donation to my JustGiving page helps fund the private treatment I urgently need, while keeping these free resources going for those who rely on them. It means more than I can say.

Thank you for being here. Your support keeps this going, and reminds me why I keep going, too. Wherever you are in your journey, please know, you’re not walking it alone.