Coping in the Face of Disaster
Experiences of patient resilience on neurological wards
When my partner Dan and I were taken into a quiet clinical room off A&E and given the news that a large mass had been found in the right side of my brain, my initial reaction was not what might have been expected. I remember sighing with the relief of validation. After weeks of headaches, strange behaviour and disorientation, finally knowing the cause of my symptoms meant we could start to look at a cure. It took until Dan and I were alone at my hospital bed shortly after for things to sink in. Dan held me close and we wept for a good half hour. Then we had to say goodbye and just like that, I was alone with a huge, mysterious mass in my brain. Something which by its very nature, posed a threat to all that made me me.
Between diagnosis and surgery, I tended to show a brave face to all but my immediate family and Dan, including almost all medical staff. Emotionally, I switched into something I called ‘emergency mode’ which now I think about it, was a mixture of the ‘fight’ and ‘freeze’ stress responses. This occurred pretty automatically and manifested itself in dark humour and a total trust in my doctors’ ability to cure me. This trust paved the way for hope and in turn that kept me from spiralling down into a depression which could have rendered important treatment decisions impossible to make.
Beyond the stresses of diagnoses and prognoses, there are many things that affect the mental wellbeing of inpatients and it doesn’t matter how world-renowned or amazing the hospital is. Symptoms, side-effects, the continuous beeps and dings of medical equipment, a lack of privacy and dignity, loneliness, boredom and frankly, the stress of being in an unfamiliar place surrounded by other poorly people can all wreak havoc with the psyche. Currently in the age of Covid-19, patients are also having to deal with severe restrictions on visitors and the alienating experience of being spoken to through PPE during every interaction with staff. So there’s a lot to deal with!
Just over a year after my own inpatient experiences, I see and meet patients at all stages of treatment who have likewise received devastating news. As in my case, finding the funny side of their situation can sometimes be incredibly beneficial to them. Brains behave in all kinds of strange ways on a neurological ward and the results can occasionally be really quite funny. On several occasions, I have been party to the strange utterances of patients who try to say one thing but come out with something utterly nonsensical and then burst into giggles because they’ve found the whole event hysterical. I also get a lot of sarcasm which I personally love, and a good banter to and fro with a patient can really make my day. Humour allows us all, staff and patients, to confront the trauma of hospital in a way that leaves us laughing rather than crying.
In addition to humour, patients have a number of practical ways of dealing with stress on the ward. Some are very simple, e.g. wearing ear plugs and sleeping masks if other patients are making distressing noises or having the curtains drawn if there is an unpleasant conversation going on nearby. Others are not so simple but can be far more effective. Where other patients can be the cause of increased anxieties and stress, they can also be the source of immense comfort.
Walking into a ward bay, the overall mood is one of the first things you pick up on. There is a world of difference between a bay in which the patients keep to themselves and one in which patients have engaged in conversation with each other, no matter how briefly. Through simple interaction, the alien ward becomes slightly more familiar and less lonely. Occasionally, a ward has one or two characters on it who can just bring a whole bay together. One patient proudly reads the headlines out to everyone and discussion permeated by “oooos”, head shakes and tutting ensues. Later, two patients exchange contact details so they can stay in touch with the only other person they’ve ever met with the same rare neurological condition they have.
On an individual level, part of my role as a volunteer is to offer patients the tools to distract themselves. Currently, this takes the form of a trolly service offering free magazines, puzzles, newspapers and audiobooks. In my experience, the most popular of these have been the gossip magazines which offer easy reading, escapism and a link to the mysterious and more ridiculous goings on in the outside world. Patients who would never normally care to find out which Love Island celebrity had a hair disaster this week, find themselves gorging on the latest sizzling gossip and asking themselves what kind of person would really run off with the groom of their best mate.
I am constantly in awe of patients’ abilities to adopt unfamiliar behaviours and attitudes like these which enable them to approach the perils they are facing with positivity and courage. Given that the mental wellbeing of one patient can directly impact that of the people around them, I like to think that even if only one patient takes a magazine, the positive effects it will have on their mood will filter through to those around them.
Whilst humour and distraction enabled me to cope well enough before surgery, I found it much more difficult afterwards. Looking back now, I can say with confidence that a lot of this was down to a mixture of necessary drugs that resulted in an inability to sleep and vivid audio and visual hallucinations, not to mention the physical changes that had just occurred in my brain! A lot of the time I was an anxious wreck and friends that I had been cheerful around only days before, were now confronted with a very scared, paranoid me begging for a distraction or grounding from an anxiety attack. For the few days after my surgery, I was convinced that my heart was giving up on me and that there was a conspiracy in the hospital against me and the nurses. Utter nonsense of course, but so very real to me at the time. My perception of reality was totally askew.
Interestingly during this period, I was far more likely to talk to Health Care Assistants or volunteers about my anxieties than the nurses or doctors simply because I didn’t want to disappoint them or waste their time. Often, I held back even from letting the Health Care Assistants or volunteers know the extent of my suffering for the same reason. Asking for help when I needed it would have probably made a huge difference to my experience, but instead I suffered in silence.
It’s patients like me who we need to remember as we make our rounds. Recently, I have found that such attitudes are very common on wards. I often hear phrases like “well I wouldn’t want to bother the nurses with that” or “it’s not important.” Listening out for those phrases and being attentive to body language and other non-verbal cues is essential and something which we volunteers are in a prime position to do. Much of the time, reassuring patients that it is okay to ask for help and it’s part of what ward staff are paid to do is motivation enough and the stress can be alleviated by the newly informed ward staff.
Speaking of staff, my next blog, ‘Hot Chocolate and Custard Creams’ will focus on those interactions I had with ward staff which really made a difference and helped me cope when I felt most vulnerable. After all, in hospital, getting better is a team effort. For now though, I’ll leave you with the simple message that despite the darkness that seems to shroud an admission to hospital, the light which shines through there is often the brightest we encounter. And much of it comes from within.
“The National Brain Appeal raises funds to advance treatment and research at The National Hospital for Neurology & Neurosurgery and the UCL Queen Square Institute of Neurology — together known as ‘Queen Square’.”
