Breaking the Silence: The Hidden Struggles of Chronic Health Conditions

Explanation

I uploaded a blog post about my health in May, a summarised version of 8 years of my life. Where I tried to cram nearly a decade of experience, knowledge, and breakthrough moments into a few paragraphs. It was only after I posted it that it felt like I had done my own story a disservice. How could I accurately describe to you in only a few short lines the impact a chronic condition has on every facet of life?

I titled the previous piece of writing ‘The Dark Night of the Soul’, an apt heading, though for me if I’m honest it felt more like years rather than a single night or season. Years dominated by a haunting reoccurring question rooted in pain, heartbreak, and confusion. Where are you in this Lord?

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Background

I was an energic kid, hyper and as loud as they come. Constantly running around, always a dishevelled ball of energy, and clothed in bright mismatched outfits. Relentlessly pushing to stay up later, though I was consistently last out of bed in the mornings. Disappearing into made up adventures, digging for dinosaur fossils with my brother, and always craving to be outdoors. I was content, secure in my place in the world, knowing I was fiercely loved.

The transition to secondary school was far more challenging. I quickly realised that I was a very small fish in a very large pond, swimming against a current of people who were angry, hurt, insecure, and desperate for the love I had been secure in my entire life. Doubt can be a corrosive force. At least for me it was. The first seed took root in me at 11, and it grew deep, that perhaps I wasn’t worthy of the love I had been given so freely.

My first period came when I was 14, I remember it vividly because I was so freaked out. Even though my mum had prepared me for this eventuality, nothing can stop the immediate, all consuming, human reaction to seeing blood and thinking, well alright then this is it, I’m clearly dying. Not helped by my poor Dads reaction, of panic and then what seemed like forced enthusiasm at the time, “Yay you’re a woman now! Whoop congratulations!”

I never thought I would be congratulated for bleeding, that felt like something that needed to be fixed, instead of celebrated.

My first 2 years or so of periods were not enjoyable, but not what is considered abnormal. Achy cramps and the constant craving for a chocolate bar. Not unmanageable, and with a Dad who was happy to buy chocolate for me, not the worst thing in the world.

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Downhill

Though that started to shift around 15/16. Incrementally at first, then it felt almost all at once. It went from a barely there ache, to actual pain in my abdomen. Sharp, precise, stabbing pain. Like little knives being twisted. I began to experience exhaustion unlike anything I had previously faced. I could barely keep my eyes open, but due to the pain, I couldn’t close them either. It was like a kind of cursed time loop I couldn’t escape. Pain. Sleep. Pain. Sleep. Again and again and again.

The female experience is the frustrating fact that no one really knows what normal is supposed to look like when in comes to our bodies. I was very young and didn’t have the vocabulary to describe what I was enduring accurately. For probably around the first year of my periods going downhill those around me weren’t able to grasp what I was trying to say. Not that I necessarily blamed them. I was also known for my dramatics, and I would take any excuse under the sun to avoid school, a place I hated more than there are words for. And school attendance was mandatory in my house, with a mother who was raised with the mentality that nothing short of a signed death certificate excused you from school.

It was incredibly isolating. Fighting not only to convince my family that I wasn’t lying about the level of pain I was in, but also to remind myself. It was easy to know when I was in pain that there was something wrong, but when that faded and I was physically okay again, my brain began to tear me apart. Making me doubt myself, more then I already did. Compounded by the doubt of those around me I felt like I was losing my grip on reality.

During my sixth form years is when my family started to clock this was serious. I collapsed a number of times at school where parents were called to collect me. My symptoms had only been getting worse.

Not just pain in my abdomen but crippling torment, which had spread to my back. Deep, throbbing, pulling tentacles of agony that wrapped around my lower abdomen and reached to engulf my tailbone and spine. Nausea that meant I spent the vast majority of my time with my head in the toilet or curled up on the bathroom floor. Fatigue so strong my limbs quaked, making me look like a new born lamb trying to gain their feet. The exhaustion was a welcome reprieve from the pain, the waves of it dragging me under to fitful sleep. Though dizziness and disorientation plagued me when I was conscious rendering me utterly useless. To top it all off I was perpetually grey. All colour had been leached from me, so I resembled more a corpse than a living person. Which was certainly a reflection of what was going on internally.

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