People often look at me and see strength. They see a bodybuilder, a brave single mother, a woman who trains heavy at the gym, works tirelessly, smiles constantly and keeps going. They see independence, resilience and discipline. They see somebody who appears normal – the epitome of health even – and because of that, they cannot comprehend the reality that I live with behind closed doors, the agony that I am in, and how endlessly I have to fight just to seem fine.
I fight for my life everyday, simply to tread water, and it’s so incredibly draining. Because I look like a normal person, right? No different to everybody else…
Receiving my late diagnoses of autism, ADHD and Hypermobile Ehlers-Danlos Syndrome (hEDS) at the end of my thirties has completely reshaped the way that I understand my life and future to be. In many ways it has brought relief, validation and answers to questions and concerns that I’ve carried with me for decades. But it has also dented my pride in ways that I never expected possible and thrown a weighty dose of uncertainty my way.
I have spent my entire life trying to be strong. As a single mother of two, strength wasn’t optional. I pushed myself beyond exhaustion to provide, protect and survive for my children. To be their everything, their world, protector and provider I had to be 200% of who I am. Independence and resilience literally became my entire identity, as asking for help felt like failure which I simply couldn’t accept. Rest to me felt lazy, and as a result of this, daily pain became normal.
Now I’m having to learn that strength can also mean adaptation, acceptance, slowing down and listening to a body that is no longer willing to negotiate with my fearless mind. Living with hidden disability feels like being stranded on a desert island with limited rations, never knowing exactly how long they need to last in order to space them accordingly. You don’t want to risk starvation, but equally you need enough energy to stay alive. Every task therefore becomes a calculation throughout my day, and every outing in turn is a risk assessment. How much energy can I afford to spend today?
If I go shopping, will I still be able to function tomorrow after the lady in front of me takes longer than expected at the checkout and my knees give way? If I travel for work, will I spend the next three days recovering in pain from having to stand up on a busy train during rush hour? And if I push through fatigue, rathe than increasing my stamina will I trigger a flare that leaves me crippled for an entire week?
There is no rhyme nor rhythm to it, no reliable warning system or rule book to follow. One day I can feel so capable, productive and youthful beyond my years. The next, it’s as though I’ve aged ten years overnight, my joints fail me, my body buzzes with inflammation and exhaustion, and simple everyday tasks become absolute mountains to climb.
Will today be a day when I feel 30yrs old again, or will I wake up with the capabilities of a 60yr old? Your guess is as good as mine, toss a coin! The fact of the matter is that most people age gradually. My body feels like a rollercoaster between celebratory strength and suddenly collapse which is almost impossible to explain to people that my body feels like a ticking time bomb. I am constantly balancing on a tightrope between overdoing it and facing injury, or becoming weaker through inactivity and resting too much. Too much movement can injure me and heighten my inflammation, whilst too little movement can decondition me that makes it even harder to get back to my current level of ability. When you live with a condition where weakness only makes life harder, the stakes feel terrifyingly high.
It’s the same as me asking you how long can you hold your breath underwater for before you panic. Or how little food could you survive on if you didn’t know if or when more was coming. This is exactly what managing my energy and capabilities feels like every single day. My good days can be great, but my bad days are absolutely devastating.
People assume that because I have spent a decade building muscle and nurturing discipline, that I must somehow be immune to suffering. But bodybuilding has never been about vanity for me. It is about survival. Strength training gave me structure, purpose and protection in a body that often feels fragile, too loose and too weak. Nutrition, recovery and injury prevention are no longer lifestyle choices for me, but necessities for survival in everyday life as they are quite literally the difference between functioning and absolutely falling apart.
And yet despite all of this, some of the hardest battles that I face in life are entirely invisible to others. The sensory overwhelm and exhaustion of masking autism has led to me facing panic attacks more frequently. And the mental chaos of ADHD has wreaked havoc on my memory, so my house is filled with notes and reminders. The grief of realising that I have spent a lifetime forcing myself to live like everybody else, while secretly struggling in ways that I could never fully explain is finally settling in following my multiple late diagnoses that I literally had to beg for after strangers recognised my symptoms on social media and informed me of the conditions that I suffer from, yet had never heard of nor been suggested by my doctor when I repeatedly presented my symptoms.
There is such deep loneliness buried within hidden disability. You begin doubting yourself because everyone else doubts you too. You look “fine,” so you convince yourself that you should be coping better. This made me deny and minimise the weight of my pain. I apologised for my limitations and instead pushed myself to breaking point to not be a burden to others or fail to meet expectations. And now I find myself mourning the version of myself that could push endlessly without consequence through the ignorance of youth.
But I am slowly learning that survival is not weakness. Adapting is not failure, and needing more frequent rest as I age does not erase the strength that it took for me to get to where I am today. My spirituality as a Buddhist has really helped to carry me through this transition in my life as I begin to come to terms with and understand my disabilities. Buddhism teaches acceptance of suffering, impermanence and the fragility of life, which reminds me that tomorrow is never promised, and because of that, every day holds such value and meaning for me, even the painful ones.
Chronic illness had this very unsubtle way of stripping away the illusion of control in life and forces you into the present moment, whether you want to be there or not. Some days I feel frightened by how vulnerable my body truly is, as I notice every unstable step, every injury, every warning signal from my nervous system that sends my alarm bells ringing. I am more aware than most people that life can change in an instant, and because of that, I believe I love and appreciate my life all the more.
I believe that having awareness also deepens our ability to feel gratitude, and despite everything that my diagnoses have unearthed surrounding my present day and future, I am still here, still loving, mothering, fighting, adapting and finding meaning inside of a body that doesn’t always cooperate with me. And that’s ok.
Strength no longer means convincing myself that I am invincible, it’s now about learning how to live openly within my changing reality, and still choosing to smile and have hope through the darkest of days. Ultimately, the challenges that we face in life make us the unique and wonderful individuals that we were born to be. Life is a blessing, and it’s entirely what we make it.
