Amnesia and identity

Following a brain injury, survivors often experience a wide range of symptoms and challenges, which can include adjusting to a new sense of identity and issues with memory.

In this article, we look at amnesia and hear from brain injury survivor Sandi, about her personal experiences of living with the condition and how it’s impacted her self-identity.

What is amnesia?

Memory problems are one of the most common effects of brain injury, with people often having difficulties with remembering things on a daily basis or events from before their injury. ‘Amnesia’ is a term that specifically means ‘a lack or absence of memory.’ However, nobody forgets absolutely everything, so amnesia refers to a failure of some part of the memory system(s) of which there are several different types, with various parts of the brain involved.

For instance, old memories are stored differently in the brain from new memories. This is why people are sometimes able to remember things that happened many years ago but fail to remember what they did the previous day.

Information from before the brain injury may be forgotten. For most people with brain injuries, this gap in memory from before the injury will range from a few minutes to a few months. This type of memory loss from before the injury is known as retrograde amnesia. Memories laid down well before the period of retrograde amnesia are likely to be retained well.

Problems with memory for information learned after the injury are known as anterograde amnesia.
Sometimes the term ‘amnesia’ is used to mean any kind of memory disorder, and sometimes it is used to mean a very pure memory problem, for instance if memory impairment is the only problem faced by an individual. However, it is much more common to find people who have a memory problem along with other problems, such as impaired reasoning or fatigue, which can collectively impact on the person’s sense of identity.

Sandi’s experience

Sandi survived multiple brain injuries and, as a result, has struggled with both retrograde and anterograde amnesia. She wants people to understand the significant problems memory issues can cause and the impact they can have on someone’s sense of identity.

She said: "Before sustaining this injury, I could speak different languages, enjoyed playing sports, and traveled extensively.

"After my brain injury, my inability to encode, hold, and retain new memories and retrieve dormant decades of my past was severely impacted.”

Post injuries, Sandi had no memory of Christmas, Easter, family, where she had lived, or what she used to eat and is still very much learning about her former life many years after sustaining her injuries.

Daily, I was unable to remember things people take for granted, like whether I had eaten or not,

Sandi said “When you are unable to understand the value of money, people take advantage of you. I couldn't remember if I had house visits, what a birthday was, or even the significance of Christmas.

“I was unable to understand context, so although I had always been known for my sense of humour, with amnesia I believed literally when a lot of things were meant figuratively. If someone said to me, “You’re family”, I would believe they were actually my family. As you can imagine, this makes you incredibly vulnerable and leaves you exposed to dangerous situations.”

Over the years, Sandi has found ways of coping with the challenges her situation brings and has found ways to aid her memory.

“Repeat, repeat, and repeat again,” she said. “Just because you don’t recognise something immediately, doesn’t mean hope is lost.

The first step of recovery, was when Headway - the brain injury association suggested I buy jigsaws for one-year-olds, transport ones, fruit ones, and animal ones to name a few. They also suggested buying various child picture dictionaries. This was the foundation of linking a picture to a word.

Using paid support, I created a visual library which took several years. For example, using the addresses of where I previously lived from my records and photographs of the outside of these places, I was able to slowly piece together memories of my life at these places.

I used spices and herbs to relearn and link smell and taste. Memory is linked with your senses so familiar smells can help retrieve them. Now, I feel I am being reunited with my past. Amnesia robs you of comparisons and your sense of who you are. Without being able to hold context, you are living in constant chaos, misunderstanding, and confusion. Without memory, you have no ability to know where you are - let alone who you are! You can’t recognise the pieces of the jigsaw that link the pieces of your life. My ultimate strategy is my tenacity and not giving up. I am now better able to make informed life decisions that are in my best interests. I am so grateful for this opportunity to have the context of my life and this start of prospective memory in the past three months, feels I have changed the unchangeable.

My message is that loss of memory and amnesia needs to be taken seriously, as it can rob someone of their sense of self.

If you have never experienced a lifetime without context, you simply have no idea, how frightening, life was without it. The disbelief and relief is hard to express other than I am so very grateful. I have no idea what would have happened to me had Headway UK not stepped into my life. Thank you all so much! The past few months are now like living in a world of wonder as I'm now constantly recognising so much more!"

You can read more about Sandi's story here.

Further information and support

Some of the information on this page is adapted from Headway’s publication Memory problems after brain injury, which includes more details and practical strategies to help live with memory problems.

More information on brain injury and memory problems can be found here.

You can also contact the Headway helpline to discuss any of the issues covered in this article.