Hidden Disabilities

If I asked you “how many people live with a hidden disability?” or “what is a hidden disability?” would you be able to answer? Sixteen years ago, I had no idea myself.?

Research estimates that 1 in 7 people across the globe live with a disability and 80% of those disabilities are hidden. That is 1 billion people on earth living with a hidden disability. “What about the UK?”, I hear you ask. Well, 1 in 5 people in Great Britain lives with a disability and again 80% of those disabilities are invisible. That’s over 10 million people with hidden disabilities living in the UK. Ten. Million. People.??

But what is a hidden disability? It is a non-visible condition, impairment or chronic illness that can significantly affect a person’s normal functioning on a day-to-day basis. These hidden disabilities can be physical, mental, or neurological. Examples of hidden disabilities include ADHD, Alzheimer’s condition, Asperger’s syndrome, asthma and respiratory conditions, auditory disabilities, autism, bipolar disorder, brain injuries, chronic pain, Crohn’s disease, cystic fibrosis, depression, diabetes, deafness and hearing loss, dementia, dyslexia, dyspraxia, dysgraphia, epilepsy, language processing disorder, learning difficulties, lupus, mental health conditions, rheumatoid arthritis, Schizophrenia, sleep disorders and visual disabilities. This is by no means a complete list, so if I have missed a condition, impairment or chronic illness that resonates with you, forgive me.?

Depending on the condition, a person can be in chronic pain, feel constantly exhausted and, as a result become isolated. Because these conditions are not always obvious, it is difficult for other people to understand, sympathise, empathise, or simply acknowledge the difficulties faced by someone with a hidden disability.?

So, why am I writing about hidden disabilities? Because I have/had one. In 2006, after weeks of blinding headaches, a routine eye appointment identified I had papilledema (swelling of the optic nerve) which if untreated can cause blindness. I was sent to an ophthalmologist who baselined my peripheral vision and was admitted into hospital to start a succession of tests to rule out what was causing the papilledema. Slowly but surely the possible causes were ticked off – no it wasn’t a tumour, cancer, or a bleed on the brain. I was of course hugely relieved and thankful every time the answer was no. But I simply wanted to know what was going on in my head. Eventually, after three months of severe headaches all day every day, endless tests and medication that rendered me unable to function, I had a lumber puncture and finally a diagnosis. Idiopathic Intracranial Hypertension (IIH). Hooray! I had an answer. I could now research this condition, work out how I could manage living with IIH, return to work and function like I had for the previous 36 years of my life. Or at least that’s what I thought!

IIH is a rare condition causing excess fluid to build up pressure in the cerebrospinal cavity and, as the idiopathic, states nobody knows what causes it. Living with the equivalent of a migraine from the moment you open your eyes in the morning to when you close your eyes to go to sleep at night is physically exhausting and mentally demoralising. Particularly when your peripheral vision is being impacted. Regardless of everything that I researched, being able to return to work full time was my number one priority.?

For four and half years, my life comprised of waking up with a banging headache, getting up, taking medication that didn't help, going to work to do the best job I could, coming home, having dinner, taking more of the same unhelpful medication, and going to bed with the same banging headache I had woken up with. That was every working day from Monday to Friday.??

If asked why I occasionally wore sunglasses in the office, I would be embarrassed to have to explain the condition and it’s impact on me using the now well known Spoon Theory. On Friday evenings I was completely out of spoons and had started borrowing my spoon allocation from the weekend ahead. In other words, I was beyond exhausted. My weekends were no different in terms of headache but were spent resting, sleeping, and recharging my batteries ready to have enough energy to get me through the next week of work. Monthly check-ups with a neurologist and ophthalmologist for lumber punctures and field vision tests also became part of my normal routine. But, I was back at work and was proud of myself for pushing myself to achieve that.?

And then one day, I could no longer take the pain, or the way I was living, and in an appointment with my neurologist I broke down in tears. I begged him to do something. My neurologist referred me to The Heath in Cardiff, where one sunny Wednesday morning, I met a neurosurgeon who would quite literally give me my life back.??

They recommended that I have ventriculoperitoneal shunt surgery. This is where a flexible tube is inserted into one of the brain’s ventricles (fluid filled space in the brain), a valve sits behind an ear, the tube then passes down through the neck, and the other end is inserted into the peritoneum or stomach. This shunt would divert the excess cerebral spinal fluid that was building up continuously in my brain, relieve the pressure on my eyes causing the papilledema and ultimately reduce the headaches. Less than 1 out of 10 people with IIH are recommended for surgery, as it is only available for severe cases, where all other treatment failed. I had done my research and knew the risks associated with shunt surgery - malfunctions, infection, kinking, blockages, and over-draining - but at that point I simply didn’t care. It was the only option that offered me hope for a brighter future.?

To be fair I also didn’t have much time to think about the risks of surgery. The day after my first appointment I was telephoned and asked if I could return to The Heath by 5pm that evening. A slot for surgery had become available on Friday morning! Mr G took me to Cardiff that evening and I was warmly greeted and checked in to the neurology ward. Surrounded by patients in critical care, I felt like a fraud awaiting surgery for a 'headache'. When the evening ward rounds started, I didn’t have many questions for the neurosurgeon or her team – I simply put my faith into them 110%.??

When I came to after surgery, I was very groggy and couldn’t string a sentence together. I do remember my husband being very excited because he had been shopping and bought himself a brown leather Belstaff jacket whilst I’d been under the knife??!! Those who know me won’t be surprised that I woke up hungry as I hadn’t eaten since lunchtime the previous day. But I couldn’t even eat the sandwich I was given as I simply fell asleep with it in my hand!!??

On Saturday morning I asked when I could go home and was pleasantly surprised when they said as soon as I wanted. Mr G says it was too early as I was grey that day. But he drove me home. I simply wanted to sleep in my own bed and on my own pillow to fully rest and recover.??

It took a couple of days to realise that after nearly five years I no longer had a headache (I blame the aftereffects of the anaesthetic)!! There was a little pain at the scar sites from the surgery, but the 24/7 constant energy sapping, soul destroying chronic pain was gone. I know that at anytime this shunt could fail, the severe headaches will return and I will require repeat surgery. But that is a risk I am very happy to take, to enjoy life pain free.??

During the almost five years of living with chronic pain, I never classed myself as having a disability and never ticked the disabled box on an application form. Not because I was not entitled to, but because of the old school stigma associated with having a disability. Social media and the younger generation I work with (and have in my family) are rightly so much more accepting of differences – no matter what they are. Don’t get me wrong, I haven’t suddenly started to use having IIH as a badge of honour. I probably won’t ever tick the disabled box on a form. But I will openly talk about it now to help other people to understand that there are 10 million people in the UK (and 1 billion people globally) living with a hidden disability. Don’t judge what you cannot see. As the charity Hidden Disabilities says “just because you can’t see it, doesn’t mean that it is not there”.?