‘Please may I use the bathroom?’, I asked.
Desperate for the loo while on a family holiday in Spain, I clearly remember the expression on a relative’s face – and the slight huff – as she said, ‘It’d be better if you could hold it.’
As a child, I would do anything to stop that fed-up sigh, but I couldn’t help it. Living with a disability, I’ve always needed help finding accessible bathrooms and making sure there are things like handrails so I can use them independently – and it’s always made me feel like a burden.
So, after that holiday I decided, aged 12, to stop drinking water. I figured, if I didn’t need the bathroom, I wouldn’t be such an inconvenience.
When I was born I suffered a brain injury which led to me being diagnosed with cerebral palsy. It meant that I’ve always had to – and always will – rely on a wheelchair.
Growing up, people would call me brave – and it made me feel like I had to be that courageous person, keeping my emotions and needs quietly in check.
But there was always the issue of going to the loo.
Finding suitable bathrooms has long been a constant source of stress. They may be far away, and handrails are often broken and unsafe. Recently, I was in a hospital and couldn’t reach the lock on the disabled toilet door.
As a child, my parents would gently suggest that I just had to accept these sorts of situations. I could tell they were frustrated – but in my mind, I felt it was aimed at me, rather than at society or inaccessible venues.
On reflection, I know I should never have blamed myself for simply needing the bathroom – but I did. So, I went from drinking roughly two litres of water a day to maybe a single cup. By the time I was at university, I often lived on a mug of coffee a day, even while completing a law degree.
It meant my head would throb and I’d feel constantly run down, but I just assumed that was ‘normal’ for someone with cerebral palsy.
It got to the point that if I knew I was travelling by train, I would deliberately stop drinking any liquids all day because I might not find an accessible toilet for hours.
But still I suffered moments of being made to feel like a burden.
I remember once being a bridesmaid at a family wedding when I was 30 – trying so hard not to make the day about me, but feeling like I’d failed when I had to ask for help getting to the accessible toilet. It was on a hill, and I knew I wouldn’t be able to handle that alone. I ended up apologising to the same family member who’d suggested I should ‘hold it’ in Spain – as, whenever I asked them to help me, they made me feel I had asked for too much.
It wasn’t just family members, though. Once, at a local bar when I was around 22, I needed the toilet. The staff were angry because they were using the disabled bathroom for storage and had to empty it before I could go in.
There came a point at which I couldn’t get out of bed or dress myself
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At least dehydrating myself meant I didn’t need to go through so many of these soul-destroying moments, as I could last for hours and hours without needing to pee.
But my quality of life plummeted.
My existing symptoms were intense pain and extreme tiredness; and when I stopped drinking water, it got considerably worse.
I could feel my muscle spasms and tightness increasing; I knew I was mentally exhausted. My eyes would sting with fatigue. I also had more general symptoms of dehydration, like a dry mouth and dry skin.
I knew, in short, that life was getting unbearable. But I just thought this was what life was like when you had cerebral palsy, and I felt I had to grin and bear it.
My mindset was reinforced by doctors who told me that my symptoms were always going to be debilitating and that I needed to find a way to ‘manage’ them better – so I tried to push through.
At first, nobody knew just how much I was restricting fluids; but even when I told my doctors I was deliberately trying not to drink water, they didn’t ever remark on it. It was just never acknowledged as a problem.
There came a point at which I couldn’t get out of bed or dress myself. I was exhausted, and I never stopped having headaches. I could barely do my work as a freelance journalist – I could barely do anything.
I’ve never been so physically or emotionally low. I would spend hours just staring at the wall just feeling utterly drained. I felt like my body was shutting down.
Two years ago, when I was 32, every symptom worsened dramatically. My muscle spasms and tightness intensified until I was in constant agony. I couldn’t eat much without feeling nauseated – a symptom of dehydration – and the headaches I’d dealt with all my life became so severe I couldn’t even write.
There was no ‘lightbulb moment’ when I realised I needed to be drinking water – but, over time, I gradually decided to reintroduce fluids. I was barely functioning and desperately looking for something that might help.
However, I was so nauseous that, whenever I did try to drink water, I’d often vomit it back up.
It was scary and, often, painful. But, most worrying of all, it just became yet another new normal.
Well over a year after my symptoms had worsened, I stumbled on a Reddit post about electrolytes (essential minerals needed to help maintain fluid balance, like potassium and sodium). It wasn’t medical advice, but it gave me the idea that electrolytes might help with my nausea – and they did.
I took them as tablets that dissolve in water; and, before long, I was no longer feeling the urge to vomit. After a few days, my symptoms started improving, so I kept increasing my water intake.
Within a few weeks, the spasticity in my arms decreased significantly, I stopped vomiting, and my headaches lessened.
While rehydrating with water and electrolytes certainly didn’t ‘cure’ my cerebral palsy, it made the symptoms more bearable. The pain decreased and that allowed me to sleep; which, in turn, helped with my overall wellbeing.
Now, looking back, I know I never should have tried to make things easier by reducing my water intake for over 20 years – and I realise I wasn’t an inconvenience for needing to go to the toilet. My doctors should also have warned me that dehydration can make cerebral palsy worse – not to mention, about the other, very severe, dangers of dehydration, like seizures or kidney failure.
I don’t ever want anyone else to dehydrate themselves to make other people’s lives easier. I know the accessibility problems and attitudes that got me to that place still exist; but it’s not people with disabilities who should be changing their behaviour to make others feel more comfortable.
Drinking water and going to the toilet are basic human rights – and nobody should ever feel they need to deprive themselves of one in order to avoid the other.
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