You do not seem sick: live with a brain injury


You do not look sick – a phrase that people with invisible diseases often hear.

The fact that their condition is not visible does not mean that they do not have to treat a whole range of symptoms every day.

Our weekly series is for a different person each week with a different health problem to see what it means to live with an illness or disability that you can not see.

This week, we will be talking to Donna Siggers, 47, of Southminster, Essex, who suffered a brain injury in 2014 after being brutally assaulted while working as a health worker.

She received six punches in the head and struck the back of her head against a wall.

It has caused many ailments, including convulsions, double vision, constant headaches, memory loss, dizziness, complex post-traumatic stress disorder and claustrophobia.

At first she thought she was fine. She returned to work a few days later and said the concussion had thrown her into a state of shock and denial.

However, she began to understand that she was experiencing disturbing symptoms and consulted a doctor.

She went to an emergency assessment unit where she was referred to an ophthalmic clinic.

Donna Siggers suffered a brain injury five years ago (photo: Steve Finn Photography for

They discovered damage to the muscle structure behind his left eye, causing diplopia or double vision.

From there, he was diagnosed with the other effects of his brain injury.

Initially, the doctors thought that his memory loss and concussion were temporary, but he was later diagnosed with post-concussion syndrome and his memory is still poor.

The vertigo was discovered later, while doctors thought that part of his inner ear was moving as a result of the impact.

Although she also has epileptic seizures, she is not epileptic, but she is caused by nerve damage.

She developed complex PTSD and claustrophobia because of her memories of the attack.

The impact of the attack completely changed Donna's life and she had trouble recognizing who she became.

Donna having an electrode test (Photo: Donna Siggers)

She explains, "The different diagnoses mean that they were scattered and many of them before my memory improves. At the time, I was detached and often dissociating myself.

"As I did not recognize myself physically or psychologically, I was not ready to accept the changes I had experienced and was angry at the life and circumstances that led to my injury.

"I kept a diary (with help), so I have a good record of feelings and events.

"There was a long process of mourning that did not allow me to move forward, but rather that intense feeling of inner turmoil – a desperation so deep that I did not think it was possible to recover."

As more things developed, she found herself increasingly isolated.

She adds, "The CPTSD explained a lot of what I was experiencing, but this concept really scared me and gave me an excuse to isolate myself. Isolation meant that no one could judge, whereas socialization meant leaving me vulnerable and open to others' comments and not ready for it.

"The denial hit many times, but none as strong as when I started having tonic-clonic seizures. The process itself is pretty outrageous and although I'm going to talk about it with ease now, at first I was embarrassed.

"There is a lot to exclude before you are told that you have seizures, so I had many personal questions to answer. Traveling alone through London with electrodes attached to my head is perhaps one of the most anxiety-provoking experiences I've had, but I've had the choice.

Donna regularly takes medication to control her symptoms (photo: Donna Siggers)

"More difficult than it was to have to hand over my driver's license to the DVLA – although I was not driving too much because I was too sick, it was quite obvious that a part of my life that I was Loved was now over: I was upset. & # 39;

Donna decided to talk about what she was going through to help people understand.

She has written online about her condition and is also an award-winning author. She has published a book called Lost Soul, filled with the poetry written during the therapy and her healing journey from stories shared by friends, her medical notes and the diary she kept throughout her life.

She explains, "One of the reasons that motivated my decision to be so open online and to publish my recovery story in a book was because of comments judged by other people – too often I was told that I looked healthy and that I had to "pull myself together"

"On one occasion, one man said it was unfortunate that the institutions were closed down," he continued, "because it is to whom belong people like you."

"Cutting comments can make you feel uncomfortable and vulnerable if you allow them.

Donna is still affected by her brain injury every day (photo: Donna Siggers)

"At the time, I was still suffering from PTSD, so it was the last thing to hear: now I was away or I was answering once I had had time to think about it, but at the time, such comments were hurtful and could restore my health to a downward trend.

Over the past five years, her recovery has progressed a lot, but her brain injury still has a huge impact on her daily life:

"Initially, I did not leave the house alone because I was walking aimlessly and I lost myself.

"During my first therapy session, I learned to use coping tools that included how to use GPS to locate me: I still have to use it today, but it gives me the confidence to be autonomous.

"It would take all my energy and effort to get to my local store using GPS, but I would forget the only item I went to. It took me a long time to reach this simple goal: the store is a two-minute walk from my home.

"I travel alone now when I feel pretty good, but I like that someone knows the other end if it is very far away."

Her memory is still particularly affected and she has trouble remembering what happened before her injury. A party came back slowly and she actually regained much of her memory in 2018 when she witnessed a road accident, where a man was seriously injured in the head.

She said, "Living without memory is perhaps the most frustrating process of my life. Nowadays, other people are more upset than me if I do not remember anything,

"I got used to. I've used old photographs to help me keep memories and I've taken a lot of new pictures that I watch regularly: it's not useful if people do not do not allow it, because the memory system that I have built is based on images and that it takes time for me to store it successfully.

'Although I've watched hundreds of movies and read more books in my life, I can not remember the content unless they're new: sometimes it can make conversation difficult, especially in the world I work in now.

"Catching up everything is impossible, it's useless to stress it.

"I still can not multitask – my brain just can not cope, losing my level of intellect has been hard to accept, and although I have been very lucky and won so much, there is still a lot to do.

Donna is now working as an author and speaker (Photo: Donna Siggers)

"Cooking is a big challenge for me. What takes 20 minutes in the kitchen can take hours in the kitchen: I lost interest in something that made me so happy before.

"It may seem defeatist, but I prefer to focus on the parts of my brain that are working to improve them and to minimize the stress of cooking at the moment." That's not to say that I gave up, I I just need more time. "

Fatigue also always has a huge impact, but she is determined to work and often says that she is fighting against exhaustion.

"Some days I wake up after nine hours of sleep and feel more exhausted than when I went to bed, but life must go on.

"Many people have said that I needed more compassion for myself and that I had to recognize when I had to rest: the truth is that if I rested every day, I felt bad I would never work.

'I rely unless I have a crisis – so I'll rest. I have compassion, my needs are simply satisfied differently and if I feel exhausted, I have a list of jobs that I can do for a job that gives me great pleasure, that does not require too much of concentration. Life is about finding a balance that works, "she says.

Donna's view remains weak 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 also decreased, but they still occur and Donna had to deal with additional injuries because she fell to the ground during an epileptic seizure.

She explains: "Limiting sensory overload has helped control my seizures, but they still happen.

"Often, they leave me a little hurt and that's when the invisible becomes visible: bruises appear and I've even injured a tendon and my hip and my shoulder at the point of d & # 39; Need two injections of cortisone. I cut myself using a knife at the time, or burn myself on the oven.

Donna has come a long way in the last five years (photo: Steve Finn Photography for

She had been undergoing therapy to alleviate the mental impact of the brutal attack, but added that constant efforts were needed to control the crisis and claustrophobia.

"I can often feel my CPTS boiling under the surface," she says.

"Knowing the warning signs is half the battle and having the foresight to handle them: the house alarm over the road is a trigger and it sounds far too often for my taste (a alarm sounded during my attack).

"I do not hide under the kitchen table or in the bath until the alarm stops and I feel safe. Instead, I rely on the learning mechanisms I learned. It's not my only trigger, screaming and cooking are others.

"Claustrophobia remains a huge problem, but it's a problem I'm defeating.

"The London Underground Network is my biggest challenge and because of my job I often have to use it. I am unable to concentrate on the basement conversation and I have to use many distraction techniques to stay calm. "

How to get help for a person with a brain injury

Donna was supported by Headway, for more information on brain damage, or for help,

MORE: visit their website

or call their helpline on 0808 800 2244.

They also have local support groups where you can meet other people with brain injuries.

Headway offers groups and social media forums online, where you can also connect with other people supported by the charity.

Donna still lives with all these symptoms, but wants to use her experience to educate the public about brain damage and how we treat people living with hidden diseases.

In addition to writing online and publishing a book about her experience, she also works as a speaker, screenwriter and mentor. She has also written a number of thrillers beside the book telling the story of her recovery.

She says, "The invisible disease is under-represented and therefore misunderstood. Education is vital, in my opinion, but for this to change, the government needs to recognize that the laws in place do not work for the majority of people affected.

"Teaching coping skills to reduce anxiety in schools, for example, could reduce statistics on depression and suicide, which would reduce pressure on the NHS."

How to get involved with you Do not look sick

You do not look sick is the weekly series that deals with invisible diseases and disabilities.

If you have an invisible illness or disability and want to participate, please send an e-mail to [email protected]

You will need to share photos that show the impact of your condition on your health and you have time to have your picture taken.

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