Disability History Month: The five-year battle of coping with an invisible illness
I have an invisible condition that doesn’t have a neat description or title. I had a virus just over five years ago which caused me to have the worst sinus infection I have ever encountered, which then went on to become Vertigo and cause nerve damage in my trigeminal nerve.
For those of you who aren’t familiar with either of these, Vertigo is the sensation of feeling like everything around you is spinning. A spell can last anything from a few seconds to a few hours, and the condition may be over just a few days and in more severe cases, continue for months or even years. The trigeminal nerve is responsible for sending pain, touch and temperature signals from the face to the brain.
For me, the vertigo manifests in four ways: as a condition known as BPPV (Benign paroxysmal positional vertigo), vestibular and visual migraines, Meniere’s disease and tinnitus.
The vertigo is constantly triggered by elements such as the weather, whether I have slept well the night before, stress, peripheral movements and many other little things. The autumn used to be my favourite time of year, but now I hate it – the leaves changing colour, the leaves falling from trees, the wind blowing more strongly, the sun is much lower in the sky; all of these things can trigger a vertigo attack. I can’t go to the fair because of the flashing lights and noise. I can’t travel as freely as I did previously, and I can’t drive in the dark.
The trigeminal nerve is a three-pronged nerve that stretches across the face. It starts in the jaw joint and moves along the base of the jaw, across the cheek and up and over the eye. I am affected only on my left-hand side, but that side of my face often feels as though it is burning and throbbing, causing me such pain that I can’t bend over without feeling sick and I fear that moving my head will cause an explosion of nerve pain.
Unfortunately, the trigeminal nerve comes from a nerve nucleus, which is situated in the neck. This nerve nucleus also serves the neck, arm and slightly down my back as well. So, my facial pain goes first to my neck before being transported to my brain for processing. The brain receives the messages and then cannot determine exactly where the pain has come from – the brain only knows that the pain has been felt somewhere linked from that specific nerve nucleus. So, when the brain receives messages of pain from this point on my neck, it then sends waves of pain to every part of my body that is served from the trigeminal nucleus and I get pain all down my arm, into my hand, across my shoulders neck and back.
It has been a very bumpy ride – I have had MRI and CT scans, X-rays, injections, and all sorts of interventions. I feel like I am slowly coming to terms with my condition and accepting that I was simply unlucky to contract that virus back in 2016.
When Covid-19 protestors were campaigning in early 2020, it made me so cross – “just a virus” can cause horrific lasting damage. I have seen this first hand – never underestimate what “just a virus” can do to a person.
The battle to be diagnosed
Getting diagnosed has been a nightmare and a constant fight. I have been turned away from doctors saying that I have nothing wrong. I have been made to feel small and pathetic, which has been incredibly destructive on my confidence and self-belief.
I initially saw my GP, who diagnosed the original vertigo. From there I was referred to the consultant within the balance clinic. However, I was also referred to the Rheumatology Unit because of the confusing arm and neck pain along with the facial pain and dizziness.
I have seen consultants, physiotherapists, and GPs – in fact, I have completely lost count of who I have seen and where I have been. My GP has been amazing though. She has been an absolute tower of support and a beacon for hope. Every time a consultant was dismissive, she helped to build me back up to believe that it wasn’t ‘all in my head’.
The impact on day-to-day life
The condition affects me every day. I have gone from being someone who loved to exercise and have fun to someone who is a shadow of their former self.
I’ve struggled to feel capable and able. My family life has suffered massively; my small children haven’t been able to understand why I used to go for bike rides but I can’t now, or why I never go to the fireworks or the fair. My husband has been infuriated by the way that I have hidden myself in shame, not able to talk about what was happening at my medical appointments or able to describe the condition.
At work, I have tried to mask the condition. Very few people in the office know what is going on, or how much I am battling internally. If I had a broken leg or a condition that would mend then I think I might talk more about it. However, this is a forever condition for me. It’s not going to go away, it’s not going to get better. Also, if I had a condition that I could neatly package, with a name that anyone can understand, then perhaps I would speak more openly.
This condition, for me, is a constant battle. I don’t know how I will feel when I wake up in the morning, and I don’t know if I will be able to get to the end of the day. If I am teaching, I begin each lecture with fear that I won’t be able to get to the end. And when I do reach the end of a session, I am so tired and exhausted because I have had to put everything into pulling it off.
Upon reflection, I have endured the hardest few years of my life. I have begun to rely on medication and the plethora of pharmaceuticals I need. Just to get through the day is mind-boggling.
I have had to change and become a different person and I have learnt that I am actually a brilliant actor – able to paint on my professional exterior and create a protective bubble around me. This is my survival mechanism.
Someone told me once that I walked around looking aloof and unfriendly, however, when they heard my story, they realised it was my battle armour. That armour hides someone who is constantly in pain and fighting to still be here. My call to action would be a plea to not judge others by their exterior because that can hide a world of complexity.
Despite the pain I continue to endure, discovering the Staff Inclusivity Group has been a big help. Finding people who understand my thoughts and feelings, and who I can openly and honestly speak to, has been empowering and enlightening. I wouldn’t be writing this piece without their encouragement and support!
The author of this piece has chosen to publish anonymously. However, if anyone would like to get in touch and speak to them about anything written here that has affected them, then please do get in touch through the Staff Inclusivity Group.
Any staff member with a physical or hidden disability is welcome to join the Staff Inclusivity Group, which advocates for equality in the workplace for colleagues with physical or invisible disabilities. The group is also a place to seek support from one another and challenge University policies and practices.
This blog post has been published as part of the University’s Disability History Month campaign, which aims to raise awareness of staff and student experiences as well as share a wide range of supportive resources and initiatives for the University community.
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