Live Well With Chronic Illness

15/09/2025

Chronic illness as a secret identity.

Someone once told me, *"I can be openly gay at work, but I can't tell anyone I have a chronic illness. That’s the real secret."

That really shocked me, and made me stop in my tracks.

So many people living with chronic illness stay silent, even in spaces where openness is encouraged. This can be because of internalised feelings of shame, but also because they know the shift that happens when other people find out.

You go from being seen as capable, productive, dependable, to less-than.
Less reliable.
Less valuable.
Weak.

At work, in friendships, even in families, chronic illness can become something you hide. You don’t talk about the flare-ups, the pain, the days when getting out of bed is your greatest achievement.

And of course, you shouldn’t have to share it if you don’t want to. Health is personal. You don’t owe anyone your story.

But what breaks my heart is how often silence isn’t just a boundary, it becomes a prison.

I’ve met so many people who keep their illness hidden, locked behind a polite smile or an “I’m fine,” because they’re afraid of what will happen if they’re honest.

And that secrecy, that hidden identity, can fester. It can deepen the wound. It can make an already isolating experience feel unbearable.

Chronic illness often demands more support, more compassion, more community than ever. And yet, it so often isolates the very people who need connection most.

To anyone out there carrying this secret, please know you are not alone. Your illness doesn’t make you any less worthy of kindness, respect, or belonging.

You deserve to be seen, on your terms, in your own time, but always with dignity.

12/09/2025

Every journey begins with a single breath.

Caroline Rose shares her yoga journey, including the challenges she’s faced, the healing she’s experienced, and the joy of finding balance along the way.

Yoga isn’t about perfection, it’s about presence with yourself and your body.

What has yoga taught you about yourself?

11/09/2025

𝐖𝐞 𝐥𝐢𝐯𝐞 𝐢𝐧 𝐚 𝐜𝐡𝐫𝐨𝐧𝐢𝐜 𝐢𝐥𝐥𝐧𝐞𝐬𝐬 𝐞𝐩𝐢𝐝𝐞𝐦𝐢𝐜.

Around 30% of the UK population struggles with at least one chronic condition, and many live with multiple. As therapists, we are uniquely placed to support clients – but working effectively and safely with chronic illness requires specific knowledge and skills.

𝐉𝐨𝐢𝐧 𝐮𝐬 𝐥𝐢𝐯𝐞 𝐯𝐢𝐚 𝐙𝐨𝐨𝐦 𝐨𝐧 27𝐭𝐡 𝐒𝐞𝐩𝐭𝐞𝐦𝐛𝐞𝐫 2025, 𝐟𝐫𝐨𝐦 10𝐚𝐦 𝐭𝐨 4𝐩𝐦, 𝐟𝐨𝐫 𝐭𝐡𝐢𝐬 𝐭𝐫𝐚𝐧𝐬𝐟𝐨𝐫𝐦𝐚𝐭𝐢𝐯𝐞 𝐰𝐨𝐫𝐤𝐬𝐡𝐨𝐩:

🌟 Understand the root causes of chronic illness, inflammation, and how these manifest neuropsychiatrically.
🛑 Learn to recognise red flags, contraindications, and when to refer.
🧩 Explore a holistic framework for healing and support.
🫁 Master nervous system regulation techniques for chronic illness.
🛡️ Discover how to work safely and effectively to avoid unintentional harm.
🤝 Gain tools for validation, advocacy, and trauma awareness in chronic illness.
🔥 Tackle stress and inflammation through specialised therapy tools.
✨ Overcome common challenges when working with chronic illness.

This workshop is designed for therapists of all modalities who want to better serve clients with chronic health challenges while elevating their practice through compassionate, informed care.

Empower. Advocate. Transform your practice.

Book your place today!

https://goldleaftraining.com/working-with-chronic-illness-including-long-covid

, , , , , , , , , , , , ,

11/09/2025

“There is no coming to consciousness without pain. People will do anything, no matter how absurd, to avoid facing their own soul.”

— Carl Jung

09/09/2025

Performing health vs. being honest about illness.

When you live with chronic illness, it can feel like you’re stuck in a lose-lose situation.

If you’re honest about your symptoms, if you cry, if you grieve, if you say “I’m not coping”, you risk being labelled as just anxious, overly sensitive, or having a mental health issue.

But if you pretend to be OK, if you smile, show up, make the effort, people start to wonder:
"She seemed fine when I saw her… why isn’t she working?"
"Is she really that ill?"

This is the exhausting psychological contortionism of chronic illness, constantly trying to match other people’s expectations of what “sick” should look like.

It’s a no-win situation. And it’s a heavy, daily burden.

I see this tension particularly in my clients when they first begin to make progress, and feel a little bit better. When they’ve been bed-bound for months or years, and they finally feel well enough to sit in the sun, go for a short walk, or meet a friend for coffee.

These moments should be celebrated! They’re enormous milestones. Signs of growth, hope, and slow healing. But instead, they’re often met with fear.

"What if someone sees me?"
"What if they think I’m faking?"
*"What if I lose my benefits?"

The benefits system in particular is notorious for failing to understand the non-linear nature of recovery. As if you could go from 0 to 100 overnight. As if healing doesn’t involve gradually testing your capacity, rebuilding tolerance, exploring what’s possible, short experiments, followed by devastating crashing again.

Rehabilitation from chronic illness doesn’t look like a straight line. It looks like:
Joyful coffee dates followed by days of rest
Finally visiting a place from your “when I get well” bucket list — and paying for it with pain or fatigue
Learning how to live again, one moment at a time

This is a critical part of the healing process. Exploring joy, movement, connection, even in tiny, cautious doses, because this builds strength and resilience.

But when we feel forced to hide it, to perform sick for the world in order to stay valid, it becomes another layer of stress and stigma.

Research by Joachim & Acorn (2000) shows that people with invisible disabilities often struggle with disclosure and validation, leading to identity stress, and I see this often.

So here’s what I want to say:
If you’re out for a walk today, even if you were in bed all week, it doesn’t make you a fraud.
If you laughed today, even if you cried in pain all day yesterday, it doesn’t mean you’re “faking it.”

You are allowed to have moments of life in the middle of chronic illness.
And you don’t owe anyone a performance.

Healing is hard enough. We shouldn’t have to fight to justify it too.

If you would like to explore this topic further, check out my new blog post here https://livewellwithchronicillness.co.uk/f/performing-health

04/09/2025

“I had to become someone new, not because I wanted to, but because the person I was no longer fit into the life I had.”
— Rachel Naomi Remen

02/09/2025

When illness rewrites your identity, and society makes you feel like you're less.

One of the hardest parts of chronic illness isn’t just the pain, the exhaustion, or the unpredictability. It’s the way it erodes your sense of worth, not because you’ve changed, but because of how the world now sees you.

I used to dread being asked, "So, what are you doing now?"

Because the answer “Nothing. I’m too ill to work” never seemed acceptable.

The silence that followed. The look on their face, a mix of pity, confusion, discomfort. Maybe even disbelief.

In a world that equates productivity with value, if you can’t work, can’t “contribute,” can’t keep up, you become invisible. Or worse, you become less.

Less capable.
Less valid.
Less worthy.

And the most painful part is, we begin to believe it ourselves.

We internalise that shame. We start saying things like, “I’m unemployable.”
“I have nothing to offer.”
“I’m unreliable.”
“I’m a burden.”

But the truth is: your worth has never been measured by your output.

Your value doesn’t disappear because your body is struggling. Your identity isn’t erased because your life looks different now.

Illness doesn’t make you less. It makes you human. And sometimes, surviving and simply existing in this world, in this body, is the bravest, strongest, most impressive thing you could do.

To everyone carrying the weight of shame that society handed you:
You are not a burden.
You are not broken.
You are not less.

You are still you, still worthy, valuable, and whole. Even on the days you can’t get out of bed.

28/08/2025

“The truth is, we grow most in the valleys. Not on the mountaintops.”
— Brené Brown

26/08/2025

Letting go of who I was. Embracing who I'm becoming.

When I became sick, I was gripped by a deep, bone-shaking fear.

Not just fear of symptoms, or test results, or uncertainty, but fear of losing myself.

I didn’t want to let go of the life I had worked so hard to build. My job, my passions, my routines. The things that made me me. I fought to keep them all. Tooth and nail. I was absolutely determined to fight this, to keep going. Just. Keep. Going.

I wasn’t just fighting illness. I was fighting for my identity.

But the truth is... it didn’t matter how hard I fought. I couldn’t outrun the tidal wave of infection, or stop the tsunami of inflammation tearing through my body.

Eventually, I sank.

And it was in that sinking that something shifted.

I realized that the fighting, the clinging to the past, the fear of letting go, was what was keeping me stuck. It was like holding onto a burning rope, too afraid to fall, even as it burned my hands.

And so, slowly, painfully, I let go.

Not in defeat, but in acceptance. Acceptance of what was happening to me in this moment.

And in that acceptance, I began to rebuild. Not the same life. Not the same me. But a new version of myself. One shaped by pain, yes, but also by strength, courage, empathy, compassion.

This becoming, this slow emergence of a new self, has been just as healing as any medication, food, or therapy.

I’ve become someone I never would have been before. And in a strange way, I’m grateful.

To anyone afraid of letting go, I was once you. Please know that sometimes, it is the letting go that allows real healing to begin.

Accepting that the old life is not currently possible, but a new life can be built in its place.

And now, I guide my clients through their own process of letting go, and becoming the new person on the other side of their illness.

23/08/2025

I'm now listed on the Hub of Hope!

If you are not familiar with this amazing resource, check it out. You can search for a huge number of sources of support that are local to you, or available online.

If you or someone you know is struggling, this is a great resource to recommend to them.

Whether you are looking for formal counseling or therapy, or just someone to talk to or something to brighten your day, this huge directory of mental health support services across the UK is bound to have just the thing for you.

Check out my listing, and why not search for what else they offer while you are there.

Chasing the Stigma (CTS) has launched the Hub of Hope - a national mental health database, bringing help and support together in one place, with a focus on grassroots organisations.

21/08/2025

“I used to be a person with a future. Now I am a person with a present.”
— Terry Tempest Williams, Refuge

19/08/2025

When I became ill, I didn’t just lose my health. I lost me.

I wasn’t prepared for how chronic illness strips you, not just of energy or plans, but of the very hooks you used to hang your identity on.

I was a museum curator. An events officer. I loved my job. I loved traveling, walking in the woods, visiting historic sites, listening to music, going out for meals, shopping, reading. These weren’t just hobbies, they were pieces of me. They were how I made sense of the world.

And then, one day, they were gone.

I found myself gripped by a quiet kind of panic.

I remember pacing my bedroom one night when I was particularly ill thinking ‘This can’t be happening to me. I don’t want this to be happening.’

It was like a great darkness had closed in, and I felt suffocated.

I wasn’t just isolated; I was stripped of all the adornments of identity that I had created around myself, and I found myself left alone with myself in a silent vacuum.

All the things I once reached for to define myself, gone.

No distractions. No embellishments. Just... me. I felt completely alone with myself, and at times I felt as though I might drown in that silence.

Days and days alone in bed, unable to do anything. Too sick to read, watch films, listen to music. I was entirely alone with myself. And I realised that I had no idea who that was anymore.

If I was no longer the person who went shopping, who travelled, who went out for meals, who visited garden centres with friends, then who was I?

This is a kind of identity death that often comes with chronic illness. And that’s what it felt like: death, without dying.

But what I’ve come to understand is this: when illness took away all the externals, it left me with a truth. The truth of who I was, beneath all the doing, the roles, the achievements.

I’m still uncovering her. Slowly, gradually. I’m still learning who I really am.

I’m not the same person I was. But maybe that’s not the tragedy I initially thought it was. Maybe there’s a kind of quiet power in starting again.

This feels like a destruction of self – but it can be the beginning of a new self, or perhaps a reconnection to the self you always were.