You Don’t Look Sick – a phrase that people with invisible illnesses often hear.
Just because you can’t see their condition, it doesn’t meant they aren’t dealing with a whole range of symptoms every day.
Our weekly series speaks to a different person with a different condition every week to see what it’s like to live with an illness or disability that you can’t see.
This week, we’re talking to Donna Siggers, 47, from Southminster, Essex, who suffered a brain injury in 2014 after she was brutally assaulted while at work.
She was punched in the head six times, and the back of her head was slammed against a wall.
It has caused a range of conditions including seizures, double vision, constant head pain, memory loss, vertigo, complex post traumatic stress disorder and claustrophobia.
Initially, she thought she was fine. She went back to work a few days later, and said the concussion sent her into shock and denial.
However, she started to realise that she was experiencing worrying symptoms and saw a doctor.
She went to an emergency assessment unit where she was given an emergency referral to an eye clinic.
They discovered damage to the muscle structure behind her left eye, causing diplopia or double vision.
From there, she has been diagnosed with the other effects of her brain injury.
Initially doctors thought that her memory loss and concussion were temporary but she was later diagnosed with post concussion syndrome and her memory is still poor.
Vertigo was discovered later as doctors think part of her inner ear moves as a result of the impact.
Although she also experiences seizures, she does not have epilepsy but they are caused by nerve damage.
She developed complex PTSD and claustrophobia because of her memories of the attack.
The impact of the assault completely changed Donna’s life and she struggled to recognise who she became.
She explains: ‘Having various diagnosis meant that they were spread out and a lot of them were before my memory had improved. Back then I was detached and often disassociating.
‘No longer recognising myself physically or psychologically I wasn’t ready to accept the changes I’d gone through and was angry with life and at the circumstances that had led to my injury.
‘I kept a journal (with help) so have a good record of feelings and events.
‘There was an extended process of grieving that wasn’t allowing me to move forward, instead this intense feeling of inner turmoil – a despair so deep I didn’t think it possible to recover from.’
As more things developed, she found herself becoming increasingly isolated.
She adds: ‘CPTSD explained a lot of what I was experiencing but that concept truly frightened me and gave me an excuse to isolate myself. Isolation meant nobody could judge whereas socialising meant allowing myself to be vulnerable and open to other’s comments and I wasn’t ready for that.
‘Denial struck several times but none so strongly as when I started to have tonic-clonic seizures. The process itself is undignified enough and although I will talk about them with ease now, in the beginning I was embarrassed.
‘There’s a lot to rule out before you are told you get seizures so I had many personal questions to answer. Having to travel across London alone with electrodes attached to my head was possibly one of the most anxiety-inducing experiences I’ve endured but something I had no choice in doing.
‘Harder than that was was having to hand my driving license back to the DVLA – although I hadn’t been driving because I was too ill it was a finality that a part of my live that I loved was now over: I was distraught.’
Donna decided to speak out about what she was going through to try to help people understand.
She wrote about her condition online and she is also an award-winning author. She released a book called Lost Soul, filled with poetry written during therapy and her journey through recovery taken from stories shared by friends, her medical notes and from the journal she kept throughout.
She explains: ‘One of the reasons behind my decision to be so open online and to publish my recovery story in a book was because of other people’s judgmental comments – too often I was being told that I looked fine so needed to “pull myself together”.
‘On one occasion a man passed comment that it was a “shame the institutions had been closed” he continued to say, “because its where people like you belong”.
‘Cutting comments can make you feel insecure and vulnerable if you allow them to.
‘At the time I was still suffering from PTSD so they were the last thing I needed to hear: now I would walk away or respond once I’ve had time to reflect but back then such comments were hurtful and could send my health back on a downward trend.’
Over the last five years, she has come a long way in her recovery but her brain injury still has a huge impact on her day to day life:
‘Initially I didn’t leave the house alone because I would wander aimlessly and get lost.
‘During my first therapy session I learnt coping tools which included how to use GPS to locate myself: I still have to use this today but it gives me the confidence to have independence.
‘It would take all my energy and effort to walk to my local shop using the GPS that I would forget the one item I had gone for. It took a long time for me to achieve this simple goal – the shop is a two-minute walk from my home.
‘I now travel alone when I’m feeling well enough but like to have someone familiar the other end if it’s of significant distance.’
Her memory is still particularly affected and she struggles to remember things that happened before her injury. Some of it has slowly returned and she actually regained a lot of her memory in 2018 when she witnessed a road traffic accident, where a man suffered a serious head injury.
She says: ‘Having to live without a memory has possibly been the most frustrating process I’ve experienced. Other people get more upset than me these days if I cannot remember something,
‘I have become used to it. I’ve used old photographs to help me with memories and taken lots of new images that I look at regularly: its not helpful if people don’t allow that as part of the memory system I have built relies on imagery and it takes time for me to file it away successfully.
‘Despite having watched many hundreds of films and read even more books over my life-time I struggle to recall the content unless they have been recent: this can make conversation difficult at times, especially in the world I now work within.
‘Catching up with everything is impossible, there’s no point stressing over it.
‘I still can’t multi-task – my brain simply cannot cope. Losing my level of intellect has been difficult to come to terms with and although I have been lucky and gained so much there is so much more to strive towards.
‘Cooking remains a huge challenge for me and what takes most people twenty minutes in the kitchen can take me hours: I’ve now lost interest in something that used to give me so much pleasure.
‘That might sound defeatist but I’d rather focus on the parts of my brain that do function in order to improve them and keep the stress of the kitchen to a minimum for now. That doesn’t mean I’ve given up, I just need more time.’
Fatigue also has still has a huge impact but she is determined to work and says a lot of the time she fights through the exhaustion.
‘Some days I wake after nine hours of sleep and feel more exhausted than when I went to bed, yet life has to continue.
‘A lot of people have told me I need more compassion for myself and that I need to recognise when I need to rest: the truth is if I rested every day I felt unwell, I would never work.
‘I press on unless I’ve had a seizure – then I will rest. I do have compassion, my needs are just met differently and if I feel exhausted I’ve a list of jobs I can do for work that I gain great enjoyment from that don’t require too much concentration. Life is about finding a balance that works,’ she says.
Donna’s eyesight remains poor and she has to wear special lenses with prisms to help her see but she still needs to use larger fonts to be able to read.
Her seizures have also reduced but they do still occur and Donna has faced additional injuries because she falls to the floor during a seizure.
She explains: ‘Limiting sensory overload has helped control my seizures but they do still occur.
‘Often they leave me rather injured and this is when the invisible becomes visible: bruising often appears and I’ve even injured a tendon and my hip and shoulder to the point I’ve needed two cortisone injections, cut myself because I’d been using a knife at the time, or burnt myself on the oven.’
She had therapy to help with the mental impact of the brutal attack but says it takes continual work to keep the CPTSD and claustrophobia her attack triggered under control.
‘I can feel my CPTSD bubbling under the surface a lot of the time,’ she says.
‘Knowing the warning signs is half the battle and having the foresight to deal with them the other: the house alarm over the road is a trigger and it sounds far too often for my liking (there was an alarm sounding during my attack).
‘I no longer hide under the kitchen table or in the bath-tub until the alarm stops and I feel safe, instead I ground myself using the coping mechanisms I have learnt. That’s not my only trigger, shouting and the kitchen are others.
‘Claustrophobia remains a huge issue but its one that I am conquering.
‘London’s tube network is my largest challenge and because of work I often have to use it. I’m unable to focus on conversation while underground and have to use many distraction techniques in order to remain calm.’
How to get help for someone dealing with a brain injury
Donna has been supported by Headway, for more information on brain injuries, or to get help,
or call their helpline on 0808 800 2244.
They also have local support groups where you can meet others with brain injuries.
Headway have online social media groups and forums, where you can also connect with other people who are supported by the charity.
Donna still lives with all of these symptoms but wants to use her experience to raise awareness of brain injury and how we treat people who live with hidden illnesses.
As well as writing online and releasing a book about her experience, she also works as a public speaker, screenwriter and mentor. She’s also written a number of thrillers alongside the book telling the story of her recovery.
She says: ‘Invisible illness is under-represented and therefore misunderstood. Education is vital, in my opinion but in order for this to change it has to be recognised at a government level that the acts in place are not working for the majority of the people affected.
‘Teaching the coping skills to reduced anxiety within schools, for example could reduce statistics on depression and suicide which would reduce the pressure on the NHS.’
How to get involved with You Don’t Look Sick
You Don’t Look Sick is Metro.co.uk’s weekly series that discusses invisible illness and disabilities.
If you have an invisible illness or disability and fancy taking part, please email [email protected].
You’ll need to be happy to share pictures that show how your condition affects you, and have some time to have some pictures taken.
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