Many people find it difficult to know how to empathise with survivors of brain injury. When friends or family try to downplay any negative feelings you may be articulating, it isn’t due to them being unsympathetic. For example, suppose you suffer severe short-term memory difficulties and express frustration at how you've forgotten something. In that case, people may typically try to exhibit empathy by expressing how they're also forgetful. You’ll know that their limitations are an order of magnitude lesser than yours, making it slightly annoying to hear these comments. Regardless, try to avoid contradicting folk or getting into a dialogue where you emphasise how the situations are entirely different. Learn to let it go.
The patient – 1
We can debate whether the patient is a part of the team (here), but we cannot debate that the patient is central to the team’s work, nor can we doubt that the team and the patient must work together. David Wozny has already written on this site (here) and now gives his experience of being a patient and how a patient should contribute to their progress. The words and thoughts are his. I (Derick Wade) have only edited it to improve readability.
Table of Contents
The patient - a personal introduction
My name is David, a native of Stoke-on-Trent in central England. At the age of forty-five in July 2015, I suffered a traumatic brain injury (TBI) due to a collision between my bicycle and a car. I was a freelance IT security consultant with the Metropolitan Police in London.
A simplified chronology of events follows:
- Injury (neurosurgery, then comatose): four weeks
- Hospital rehabilitation (becoming familiar with the different me): ten weeks
- Home adjustment (simply getting through each day): forty weeks
- Vocational rehabilitation (gaining life purpose through volunteering roles): fifty weeks
- Normality (returning to work): two years post-injury
This article is written in the context of my making a satisfying recovery from my head injury (TBI), such that I now lead a purposeful life. I’ve attempted to offer advice on how head-injured patients can proactively engage with rehabilitation professionals, be it in a hospital or after discharge. Given that traumatic brain injury is such a personal experience, it’d be naïve for me to assert with any certainty that what I’m proposing should work for you. However, I can say with conviction that what I’ve articulated worked for me. I’m hopeful that your reading of this article will stimulate thoughts like “I get what he’s saying” or “I could try that.”
Your ‘Normal’ Needs Re-Calibrating
It’s entirely understandable and indeed rational, while in the foggy haze of a brain injury, to imagine it is impossible to make a meaningful recovery. You may have looked in a mirror and recognised appearing physically the same as before, but you don’t feel normal.
The phrase ‘you don’t feel like yourself’ has a particularly poignant resonance for a survivor of a brain injury. It may accurately describe your feelings, while at the same time, you recognise it being so ambiguous that other people can’t possibly comprehend its deeply emotional sentiment.
Your Situation / Outcome isn't Unique
You may imagine that your injuries are more severe than what other survivors could be experiencing or have experienced. Such thoughts are unsurprising, as you’ve likely never encountered anyone who’s faced the trauma you’re going through. Your awareness is probably based upon one person – yourself!
You’ll be supported by doctors, nurses and consultants who deal with a broad range of trauma survivors on an ongoing basis. While it’s unlikely that other patients have identical symptoms to your own, medical professionals will be familiar with many common themes and aspects of trauma, such that your own aren’t uncommon to them.
Doctors will have seen their clinical guidance work for many people in similar circumstances, and you should put your trust in them – they know what they’re talking about!
Extra Sleep is Sensible
Sleep is as essential to well-being as diet or exercise, so disregarding tiredness is counterproductive. People who actively respond to their brains telling them they need to shut their eyes are smart.
You mustn’t discourage yourself from having a short sleep in the middle of the day to overcome tiredness, i.e. don’t deny yourself the luxury of a mid-day kip. I set a twenty-minute timer on my mobile phone and find it’s enough to remove any tiredness edge.
Avoid Confrontation with Well-Meaning Folk
Express Gratitude Whenever it's Due
Make a conscious effort to thank people who express appreciation for small efforts or minor achievements or encourage you. You might feel that the matter being commented upon, e.g. remembering something or completing an essential task, is relatively minor and not worthy of recognition or can even feel patronising.
It can be instinctive to give a spontaneous reply in which you’re dismissive of well-intentioned comments without considering the spirit in which they’re given – try to avoid this outcome.
Acceptance of Life Changes
You may not recover to being exactly as you were before your brain injury but learn to accept yourself. If you find it unavoidable to make comparisons, make them to your immediate post-injury state when you were at your most helpless rather than your more distant previous self. It might help to view yourself as being on a recovery journey and concentrate on living in the now.
There’s a philosophical school of thought named stoicism, the rationale of which is to separate matters that you can influence from external events, i.e., not being preoccupied with issues outside of your control. Focus on the things you can still do rather than be frustrated by what you can no longer do.
Commit to Evaluating Coping Strategies
When discussing coping strategies with medical professionals, be prepared to try them, even ones you’re convinced won’t help – perhaps even considering some as simply going through the motions. It may be that out of five proposed coping strategies, only one will be helpful – these are good odds.
Coping strategies are like cheats to aid you in circumventing some of your limitations. If you’re dismissive and close-minded, you’ll minimise the likelihood of finding an elusive coping strategy which works for you.
Dealing with Life’s Ups and Downs
Recovery is non-linear – in simple terms, it is not a straight line. You can have three good days followed by a rubbish day, but it doesn’t mean you’re back at square one. Daily diary entries are an excellent way to record progress, in which you write a short narrative followed by a well-being score. My system used the following method of putting a numeric value in my daily record
1: Excellent, 2: Good, 3: Average, 4: Poor, 5: Dreadful.
Diaries help identify positive trends and reassure you that your inevitable periodic negative feelings are a blip.
Diary entries are useful when attending clinical appointments to review recovery progress. A freely available app for Apple and Android devices was developed by the UK organisation ‘AfterTrauma‘. It has an excellent system for quickly logging diary-type entries about your well-being; I highly recommend it.
Doctors are your Friends
At every stage of your recovery journey, you must make a conscious effort when engaging with medical professionals. Their task of aiding trauma survivors is challenging since no two traumas are identical, and they can’t get into your head.
Please help yourself by helping them – they’re on your side and want to help you get better.
