A concussion, otherwise known as a minor head injury, can occur following a bump to the head. A period of nausea, confusion and dizziness can follow but for most people symptoms usually clear up after a few days.
However, in 10-15% of cases a minor head injury can lead to the development of post-concussion syndrome (PCS) and the symptoms of this can be anything but minor.
This is something 27-year-old Charli Skinner from London knows all too well.
Thrill-seeker Charli’s biggest passions were skiing, sailing and finding the next adventure.
She worked for a humanitarian organisation and travelled globally on a frequent basis.
Yet despite her action-packed lifestyle it was a simple fall in the bathroom that led to her battling the debilitating symptoms of PCS and coping with the hidden nature of the illness.
After hitting her head on a glass shower screen, Charli instantly knew something was seriously wrong.
“It was almost as though I could feel my brain function totally collapsing on itself,” said Charli.
I lost my vision, couldn’t move properly and I was in extreme pain.
Charli was taken to hospital with fears of a brain bleed but was discharged shortly afterwards with a diagnosis of severe concussion, and told to rest until her symptoms passed.
However, over the coming weeks Charli’s condition worsened.
Speaking about this, she said: “My ability to function deteriorated. I was unable to communicate or converse for more than 10 minutes at a time as I couldn’t remember and recall information. My balance also became an issue and I was unable to walk in a straight line without falling.”
Further investigations showed that Charli was experiencing a longer-term functional neurological disorder from post-concussion syndrome.
A year and a half following her fall, Charli is still recovering from her PCS and continues to experience the negative effects.
My brain injury has caused a host of serious, debilitating and long-lasting effects.
“Intense neuro-fatigue rendered me bed-bound for months. Alongside issues with severe nausea, insomnia and constant pain.
“I have also been diagnosed with autonomic nervous system dysfunction as a consequence of my brain injury, which sent my body into trauma response/high stress mode. As a result, I experience dysregulation of heart function amongst other things.
“The brain injury also uncovered an underlying condition that was triggered into flare up from the brain injury, called Elhers Danlos Syndrome (specifically hypermobility), a disease of the connective tissue (blood vessels, bones and skin).”
Unfortunately, Charli has found that the invisible nature of her disabilities led to certain additional challenges.
Charli said: “Having a hidden disability/invisible injury/chronic illness has taught me so much about the amount of work that needs to be done to raise awareness of people’s access needs.
You are constantly misunderstood, and the severity of your disability is often dismissed or ignored.
"I have experienced this countless times in seeking medical care, in the workplace, in social environments and sadly at times from family and friends.
“It is vital that people around the world don’t leave it to disabled people, especially those with invisible disabilities, to raise this awareness. Able-bodied people need to act as allies, help to create safe and accessible environments (financially, physically, spatially and mentally). Whether people’s illnesses are chronic, acute, visible or invisible, they should not have to constantly fight for their right to be heard, cared for or to survive.”
“Additionally, we need better awareness of the debilitating effects of brain injury.
My brain injury was technically classified as a ‘mild’ traumatic brain injury, but there is nothing mild about any type of brain injury. Better awareness will help people suffering from brain injury of any form to access comprehensive and ongoing rehabilitation at the time it is needed.
“Finally, something that is not often acknowledged in acquired brain injury is the grief you feel for what you have lost and the intense isolation you experience. From one day to the next you lose everything apart from your ability to survive; you feel a sense of lost identity, you lose relationships, you lose your financial, emotional and intellectual independence and you become someone who has to be cared for in the most rudimentary sense of the word.”
When asked what advice she would give to fellow brain injury survivors, Charli says: “Have hope! While experiencing a brain injury is easily the most challenging and horrific thing that has ever happened to me, it has taught me so much; resilience, true gratitude, empathy and understanding for others and their struggles, and hope.
“While you may be struggling day-to-day, you will learn to manage your conditions and things will get better. The most difficult part about recovering from a brain injury is that you have to push your limits to recalibrate and recover, but there is a fine line you have to dance on to make it work. It can only be learned the hard way, but as time goes on it does get easier.”
Charli also stresses the need for access to rehabilitation, saying: “Fight for your right to care! It is proven that with access to proper and comprehensive rehabilitation, prospects for surviving and recovering from brain injury are much greater. I struggled for a long time to access rehabilitation, but once I got it my recovery improved immensely.”
Looking to the future, Charli speaks about her desire to reclaim the sense of adventure she had prior to her injury.
“While for months following my injury the symptoms above were so debilitating, they stopped me from leaving home, working or spending time with people I loved, a year and a half after my brain injury, they are now a lot more manageable. While I deal with symptoms daily, and at times ‘crash’ for days on end, I am returning to many of the things I lost after my injury.
I am not fully there yet, but I am slowly returning to many of the things I love. I have climbed mountains and sailed across the Atlantic Ocean since my brain injury… things I never thought I would be able to do when I first got it!
“I plan to do more ocean crossings (sailing across the Pacific is a goal of mine), do a triathlon, and keep climbing mountains. I hope to continue to return to and adapt to meaningful work, whether that is in the humanitarian sector or beyond.
I have so many plans for the future, many of which have opened up since my brain injury. I have more drive than I ever did before my brain injury. While it will take perseverance and management of my condition to do them, I still hope to create a life full of adventure, surrounded by loved ones.
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