Living with Chronic Illness: How Mindset and Self-Care Transform the Journey

Nov 21, 2024

People who know me are often amazed at the things I accomplish, especially considering I live with multiple chronic illnesses: hypermobility, fibromyalgia, chronic fatigue, and migraines. Most of the time, I manage to keep these conditions at bay by using tools I’ve learned over the years, particularly the connection between body and mind.

But this week, I’ve been reminded who’s really in charge.

A flare-up hit hard, and as I sat on the sofa, frustration bubbled up inside me. I felt sorry for myself—lazy, useless, annoyed that I couldn’t even hold a cup of tea without spilling it all over my hand and the floor. Chronic illness forces you to slow down, to listen to the signals your body is sending, and to adapt.

The guilt crept in, as it always does. I felt lazy. I felt like a failure. But I reminded myself of something I’ve come to deeply understand rest is not laziness. It’s self-preservation. Chronic illness teaches you that when the body demands care, you have to give it—because the alternative is worse.

What Does a Flare-Up Feel Like?

Right now, I’m in the middle of a flare-up, and it feels like my body has completely betrayed me. The pain is relentless, a dull but unyielding ache in every joint—my fingers, toes, ankles, pelvis, knees, and neck all feel like they’ve been rusted shut. Although there’s only minimal puffiness it feels like it’s so swollen and puffy I can’t move it.

Every movement is a monumental effort, like dragging my limbs through thick treacle whilst doused in wet cement pulling you down, it’s like gravity has gotten heavier. My hands are so weak that even picking up a cup of tea is impossible. My fingers refuse to cooperate, like strands of wet spaghetti, and the smallest task feels like climbing a mountain.

Walking is no better. My legs feel like they’re encased in concrete blocks, and every step is a battle against gravity. Climbing the stairs? Forget it. It’s like dragging my body upward with limbs that no longer belong to me. Even sitting upright takes everything I’ve got—my muscles ache just from holding myself in one position, and the sheer effort of staying upright leaves me drained.

Then there’s the skin pain. It’s hard to describe to someone who hasn’t experienced it, but every inch of my skin feels like it’s on fire, like I’ve been stung by nettles all over. The lightest touch is unbearable, a sharp, stabbing sensation that sends shocks through my body. Even my eyelids ache, and the weight of a blanket feels like too much to bear. My whole body aches, like I’ve been on my feet for 24 hours in unsupportive shoes.

And the fatigue… it’s more than being tired. It’s a bone-deep exhaustion that makes even breathing feel like a chore. My body feels as though it’s been filled with wet cement, every movement heavier and slower than the last. No amount of sleep helps; I wake up just as exhausted as when I went to bed.

The brain fog is its own kind of torture. It’s like a thick mist has settled in my mind, clouding my thoughts and slowing everything down. I struggle to find the words I want to say, my thoughts slipping away before I can catch them. Even keeping track of time feels impossible—it drags endlessly, stretching every moment into something unmanageable.

My temperature fluctuates from being ok to almost feverish to cold because my body is under so much stress and inflammation it can’t regulate its temperature. Don’t even get me started on the GI issues that it then brings on.

On top of all that, my emotions are running high. Frustration bubbles up constantly—frustration at my body for failing me, at the world for not understanding, at myself for even feeling frustrated. There’s sadness, too, for the things I can’t do right now, and guilt for needing to depend on others.

This is the reality of a flare-up. It’s not just physical—it’s all-encompassing. And yet, it’s invisible to the outside world. From the outside, I look like someone simply resting on the sofa. But inside, it’s a storm. And when people say, “Just push through it, Go for a walk. Stop being lazy” they can’t begin to understand how impossible that is and how their words sting almost as much as the flare up.

This isn’t laziness. This isn’t weakness. This is survival.

The Emotional Toll of Chronic Illness

The physical pain is only part of the battle. Emotionally, flare-ups are a rollercoaster. Frustration, sadness, and even guilt rear their heads. When your body fails you, it can feel like you’ve failed.

What makes it harder is the isolation. Chronic illness often hits during moments that should be joyful—on holidays, during family events, or when you’ve finally planned something for yourself. It demands dependence on others, which can be hard to accept if, like me, you’re the one who’s used to nurturing and supporting everyone else.

Why Mindset Matters

Mindset is everything when it comes to chronic illness. It’s the difference between feeling utterly defeated and finding a way to adapt and move forward.

In the midst of this flare-up, I could feel myself slipping into self-pity. Thoughts like, “Why me? I can’t do this. I’m useless,” started to creep in. But I’ve learned that these thoughts only make the flare-up worse. Instead, I chose to ask myself: “What can I do today to support myself? What do I need right now?”

Mindset shifts like this don’t take away the pain, but they shift the focus. Instead of dwelling on what I can’t do, I focus on what I can do. Maybe I can’t clean the house or cook dinner, but I can hydrate, rest, and ask for help. And those are valid, important actions.

Communication is another crucial piece. I’ve learned to openly explain my symptoms to those around me—how I feel physically, mentally, and emotionally. I let them know what I can and cannot do, and I ask for specific help when I need it. This wasn’t easy at first; as a caregiver by nature, it felt wrong to ask for help. But I’ve come to see it as a strength, not a weakness.

Another mindset shift is about letting go of guilt. Resting when you’re in a flare-up isn’t being lazy—it’s a necessary act of self-preservation. It’s giving your body the time and space it needs to heal. I remind myself that flare-ups are temporary, no matter how endless they feel in the moment.

Mindset is also about finding the small joys where you can. During this flare-up, I couldn’t paint—a hobby I love—but I could watch light-hearted films or do a puzzle. I couldn’t push my body to do anything physical, but I could focus on my breath and repeat my favourite affirmation: “Every day, in every way, I’m getting better and better.”

Mindset doesn’t solve everything, but it gives me the resilience to face whatever my body throws at me. It’s about adapting, accepting, and doing the best I can with what I have in the moment.

Top Tips for Navigating a Flare-Up

Here are some of the strategies I use when managing a flare-up:

  1. Hydrate – Take small sips throughout the day to support your body.
  2. Eat Nutrient-Dense Foods – Give your body the fuel it needs to heal.
  3. Ask for Help – Be specific about what you need from others.
  4. Reframe Your Thoughts – Replace guilt with self-compassion. Healing is not laziness.
  5. Do What You Can – Whether it’s listening to a meditation, practicing deep breathing, or simply lying down, focus on small acts of self-care.
  6. Laugh – Watch a funny movie or show to lift your spirits.
  7. Accept the Present – Let go of what you can’t do today and focus on what you can.
  8. Trust the Process – Remind yourself that this is temporary, and healing takes time.

One of my favourite affirmations is from Émile Coué: “Every day, in every way, I’m getting better and better.” Holding onto this belief has carried me through even the hardest times.

Finding Harmony in Your Healing Journey

Living with chronic illness isn’t easy, but it teaches resilience, patience, and the importance of self-care. It’s about finding harmony between your body and mind, accepting what you can’t control, and focusing on what you can.

If you’re ready to explore tools that help you navigate life’s challenges—whether it’s stress, chronic illness, or simply wanting to feel more empowered—consider joining me at my Harmony Within Workshop or EFT Tap with Me Sessions.

Looking for something you can start today? Download my free Mindset Reboot Guide and take the first step toward finding balance in your life. To get this sign up below.

Closing Thoughts

This blog was my enough for today. Chronic illness forces us to redefine what productivity and success look like. And that’s okay.

Remember: You are not lazy for needing rest. You are not weak for asking for help. You are choosing to honour your body and give it the care it needs to heal.

Make time for your wellness, or your illness will force you to make the time.