Mental Health and Mindset

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PERSPECTIVE SHIFTS CHRONIC ILLNESS CAN REVEAL

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Living with chronic illness can be mega challenging, and it's certainly not an experience I'd wish upon anyone.

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But I also think that going through something that changes your life so significantly can bring about a profound shift in how you see the world.

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You begin to question things you previously took for granted, what really matters to you, what makes a good day, and even what it means to be happy.

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I've spoken to lots of people with chronic illnesses who've experienced similar realisations, although of course everyone's journey is different.

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Here are some of the perspective shifts that have had the biggest impact on me.

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1. YOU CAN'T WAIT UNTIL LIFE ISN'T HARD ANY MORE BEFORE YOU DECIDE TO BE HAPPY

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A few years after my diagnoses, when I was in a particularly difficult place mentally, I came across a quote from Jane Marczewski, also known as Nightbirde, who had been battling cancer for several years.

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"You can't wait until life isn't hard any more before you decide to be happy."

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And honestly, this phrase stuck with me SO MUCH.

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When you live with chronic pain, fatigue and other relentless symptoms, it's incredibly easy to fall into the habit of wishing away the days until you feel better.

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I'd find myself putting off tasks, socialising, plans, even the tiniest things, in the hope that tomorrow I'd feel more capable of doing them.

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And of course, rest and pacing are SO important when you're chronically ill, so sometimes putting things off is absolutely necessary.

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But I started to realise that there was a difference between resting because my body needed it and mentally putting my whole life on hold until my health improved.

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Because when you're dealing with chronic illnesses, there isn't necessarily an expiry date.

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You don't know whether you're going to feel better tomorrow, next week or next year.

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And suddenly, you can find yourself living in this strange state of limbo, constantly waiting for a future version of life where things will finally be easier.

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The quote really challenged me to think about what it would look like to stop waiting for everything to be perfect before allowing myself to find some happiness.

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Instead, I began looking for little moments of beauty, gratitude and joy within whatever kind of day I was having.

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Sometimes that's something tiny, like watching the birds outside, enjoying a cup of tea, feeling the sun on my skin or simply being comfortable for a little while.

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It doesn't mean that I don't still have awful days, because I absolutely do.

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But I don't want to wish my life away waiting for a version of myself that might never exist.

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And I think that's one of the most important things chronic illness has taught me. Thank you Jane, and rest in peace.

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WATCH THE NIGHTBIRDE CLIP

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2. YOU'RE ALIVE RIGHT NOW

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Back in 2022, I was going through another particularly low period, something of an existential crisis that I think can happen when you're living with disabling chronic illnesses.

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I came across a video where Sadhguru was talking about how the most important thing in our lives is simply that we're alive right now.

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And this became a mantra that genuinely helped pull me out of that slump.

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Because when we're dealing with pain, limitations, anxiety or the uncertainty of our health, our minds can become so consumed by everything that's difficult.

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We can end up focusing on what we've lost, what we can't do, what might happen in the future, or everything that feels unfair.

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And sometimes it takes a reminder of something incredibly simple to completely shift our perspective.

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We're ALIVE.

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We're here, in this human body, having this human experience, breathing, feeling, thinking and existing at this very moment.

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And when you really stop to think about how remarkable that is, it's almost impossible to fathom.

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There's an enormous amount that had to happen for each and every one of us to exist, and yet here we are.

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It made me realise that all of the other things I consider important only have meaning to me because I'm here to experience them.

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So when I'm having one of those darker moments and everything feels hopeless, I sometimes try to bring it back to that simplest fact.

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I'm alive right now.

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I'm breathing.

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Isn't that remarkable in itself?

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It doesn't solve everything that's going on in my body, but sometimes it changes the way I'm experiencing the moment.

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WATCH THE VIDEO THAT INSPIRED THIS PERSPECTIVE

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3. LIVE EACH DAY AS IF IT'S YOUR FIRST, NOT YOUR LAST

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This is actually something my dad, who passed away, used to say.

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And I've always loved it.

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We're often told to live every day as though it's our last, but my dad preferred to say we should live each day as if it's our first.

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Because imagine experiencing the world for the very first time.

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Seeing sunlight coming through the window, listening to birds singing, feeling the wind against your skin, tasting your favourite food or watching the colours of the sky change at sunset.

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Things that are so ordinary to us would feel completely extraordinary.

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And I think this idea is so beautiful, particularly when living with chronic illness.

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When your world becomes smaller because of limitations, it's easy to focus on all the places you can't go or experiences you're missing out on.

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But I've found that trying to view the things I can experience with a little more wonder and curiosity can make an enormous difference.

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I spend the vast majority of my time at home, and I've adapted to finding enjoyment in an everyday routine that might look incredibly uneventful to somebody else.

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But that doesn't mean there isn't still beauty in it.

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Sometimes I think chronic illness has made me appreciate those ordinary moments more deeply than I ever would have otherwise.

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4. YOUR DEFINITION OF A GOOD DAY MIGHT CHANGE

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One of the strangest things about living with chronic illness for years is how much your perception of what's normal can change.

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Before becoming significantly more unwell, I probably wouldn't have thought twice about leaving the house, seeing friends, doing chores, travelling somewhere or fitting loads into one day.

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Now, my idea of an incredibly productive and energetic day can look completely different.

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During my second trimester of pregnancy, for example, I kept saying how AMAZING I was feeling because I had so much more energy.

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But when I actually stopped to compare my daily routine to that of somebody without chronic illness, it was still extremely limited.

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On a really good day, I might go for an hour-long walk around my local area, come home and then spend the rest of the day sitting in my recliner.

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Or instead of going for a walk, I might have enough energy to organise a cupboard or do some things around the house.

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I still wasn't going out to socialise, taking trains or living anything like the kind of lifestyle I had before my health deteriorated.

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But to me, it felt brilliant.

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And that's because my expectations had changed so much.

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Being able to move around the house, enjoy a little walk or do something productive without triggering a major flare-up can genuinely feel like a huge achievement.

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I think learning to appreciate what a good day looks like for our own bodies, rather than constantly comparing it with somebody else's, can be a really powerful shift.

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It doesn't mean we have to stop wanting more or feeling sad about the things we can't do.

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But there's something lovely about recognising the wins that matter to us, however small they might appear to others.

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5. NOT EVERYTHING HAS TO FEEL LIKE AN EMERGENCY

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When you live with unpredictable health conditions, especially ones that can flare suddenly, it's understandable that your mind can become constantly alert to what might happen next.

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For me, having several conditions that affect different parts of my body can make this particularly challenging.

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There's always something to consider, from whether a joint might subluxate to avoiding MCAS triggers, managing migraine symptoms and trying to prevent one issue from setting off another.

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And when so much of your life involves preparation and contingency plans, it's easy for that feeling of urgency to spill over into things that don't actually need an immediate response.

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I've been learning to distinguish between situations that genuinely require action and things that can wait.

Not every task needs to be completed today.

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Not every plan needs to be perfectly organised.

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Sometimes it's okay to leave something unfinished, rest, and come back to it another time.

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Of course, when it comes to medical symptoms, there are situations that do require urgent attention, and I would never advocate ignoring those.

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But in everyday life, I'm trying to remind myself that I don't have to respond to every little thing as though it's an emergency.

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And sometimes giving myself permission to slow down is exactly what I need.

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6. YOU CAN EXPERIENCE JOY AND GRIEF AT THE SAME TIME

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Something I've learned along the way is that living positively with chronic illness doesn't mean feeling positive all the time.

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We can be grateful for the things we have whilst simultaneously grieving the things we've lost.

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We can have a wonderful experience and still find it physically exhausting, painful or incredibly difficult to make happen.

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We can be excited about something and anxious about how our bodies are going to cope.

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And we can find moments of genuine happiness whilst still wishing our circumstances were different.

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I think sometimes there's a misconception that acceptance means being completely at peace with everything that's happened to us.

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But for me, it's been much more complicated than that.

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There are things about my health that I've learnt to navigate and adapt to, and others that still frustrate me enormously.

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I don't think we have to choose between being positive and acknowledging how difficult life can be.

Both can exist together.

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And perhaps that's what living positively with chronic illness really means to me.

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Not pretending everything is okay, but finding ways to experience the good alongside the difficult.

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