A Second Awakening

When I was 19 years old, I was diagnosed with Systemic Lupus Erythematosus (SLE).

This was my first real exposure to a system so flawed yet equally brilliant—the NHS. It is only with time and prolonged experience that the flaws have become more visible, though the brilliance remains.

After a long stay in hospital in the summer of 2009, filled with tests, treatments, and the kind of uncertainty no teenager should face, I was finally discharged. I promised myself that I would live life as fully as I could. I would grab opportunities, embrace experiences, and not take time for granted. YOLO (you only live once) became my favourite term, and for a while, I really meant it. But lupus, even when quiet, was never silent.

I returned to university, few weeks after being discharged from hospital, just in time for the start of the second year. I remember having a brief conversation with one of my lecturers, letting her know that I couldn’t see the projector clearly because some swelling in my brain remained. I look back and wonder how on earth I thought it was okay to commute one hour daily on the trains to university everyday with my vision and mobility still fragile. The only answer I end up with is how eager and excited I must have been to have another chance of life and not want to miss a moment of it, alongside a high dose of prednisone.

I also returned to a part time weekend job, surprised I still had it considering I was off for a significant period. I had no understanding of employment law and was wholly unaware that my sister had organised the sick notes and informed my employer of my health deterioration. The naïve, easily pleased 19-year-old was shocked and grateful to also see a continuation of payment. 35-year-old me looks back in amusement at how very little I knew.

Living With a Timer

Although I tried to live life to the fullest, I always knew my limits. I could feel them in my bones, in my skin, in the exhaustion that no amount of sleep could fix.

I carried an awareness that shaped how I moved through the world. It wasn’t just the physical limits—it was the psychological ones. I avoided travelling too far, or travelling alone, fearful that illness would strike when I was away from safety. I rushed to reach milestones—career, relationships, personal achievements—as though I was living on a timer.

Every choice was shadowed by the quiet fear that I may not have as much time as everyone else. So in my small world, I dabbled in as much as my body would allow me to. I was also heavily drugged, in a legitimate pharmaceutical manner of course. Prednisone left me with a level of mental energy that made me feel as if I could do everything and anything and so I tried. But just like every drug, it works well until it doesn’t.

My Body as a Dysfunctional Couple

I often joke that my body reflects a highly dysfunctional couple, always fighting and in dire need of therapy.

With lupus, the couple argued constantly—chaotic, loud, and dangerous.

With myasthenia gravis, it feels like they’ve stopped talking altogether—silent, fragile, and on the brink of collapse.

The therapy in both cases? Immunosuppressants and rest.

Medical professionals with more clinical knowledge may disagree, but this metaphor is how I make sense of it.

We are taught that pain belongs in the dark and that weakness is a choice.

Yet whilst I could hide my pain with lupus, the weakness of myasthenia was impossible to disguise—and it was certainly no choice of mine. I felt the weakness as humiliation, every fall I experienced, I could not pick myself back up, I needed help and that is what hurt the most. I was used to navigating life’s difficulties, pain was a part of me that I had become accustomed to and lived my life accordingly because of it, but weakness was a word and feeling I could not relate to.

Two Diagnoses, Two Lives

At 19, I was hospitalised with lupus, close to death’s door. When I began healing, I was determined to embrace life and its opportunities.

At 35, I was diagnosed with myasthenia gravis, and the contrast could not have been sharper. By then, I was a single mum, holding down a high-stress job, and running on auto-pilot. There was no carefree “you only live once.” Instead, there was responsibility, exhaustion, and the impossibility of hiding my weakness while still showing up as a mother but forced to abandon everything else.

Slowing Down

I have now been off sick from work for almost 11 months, and this has forced me to slow down aggressively.

For the first seven months, it was only my body that slowed down. My mind continued racing, searching for solutions and fixes so I could heal faster and return to “normal.” I romanticised the past, telling myself: “I have been in far more difficult situations and yet carried on. Why can I not now?”

Perhaps it was a mix of burnout and a neuromuscular diagnosis—together completely wiping me out.

I remembered how quickly I was able to move on from my lupus diagnosis, even though I was hospitalised for a month and my organs were shutting down. Back then, I found a way forward, refusing to allow lupus to overtake my identity.

This time, it felt different. I was losing a huge part of myself, and I didn’t know how to hold on. Every interaction with family and friends felt inauthentic and forced. My smile was lost and I grappled with reality of weakness and how different it felt from pain, almost yearning for the daily pain I felt and wishing for its return instead of the weakness it replaced. I was painfully aware of how I looked, how I felt, and I wanted nothing but to hide—yet some part of me remained on auto-pilot.

As I prepare to return to work—still not the same old me—I fear that each day will serve as a reminder of everything I can no longer do.

A Second Awakening

These two diagnoses, over a decade apart, have taught me a brutal truth: resilience is not about masking pain or weakness—it’s about navigating life with it.

Chronic illness is both a mirror and a magnifier: it exposes what we try to hide and amplifies the pressures of daily life.

Humour, irony, and stubbornness remain my coping mechanisms. Gratitude—for the moments I can still be fully present—is my anchor.

Living with two chronic illnesses while raising a child and navigating the problems caused by this disease has forced me to redefine success. It is no longer about rushing toward milestones or outpacing the timer I once imagined. Success is about pacing myself, recognising my limits, and finding meaning in small victories.

Weakness is not a choice. Asking for help is not failure. Life is not a race, it’s a series of moments, sometimes painful, sometimes beautiful, that we survive and, occasionally, savour.