The Hidden Effects of Stroke

Today sees the launch of the Stroke Association’s Lived Experience Report, the biggest ever survey of stroke survivors and carers.

When a person has a stroke, it can devastate their life in an instant. It can affect their physical health and abilities, their mental health, their emotions and how they function cognitively. Some people lose the ability to speak. Others lose their ability to process information. And some lose the feeling of who they are. While some effects of a stroke may be obvious to others, many are hidden and therefore stroke survivors do not always receive the help they need. This fantastic report was compiled by the Stroke Association to better understand the challenges facing stroke survivors.

There are over 1.2 million stroke survivors living in the UK and the report findings reveal that 9 out of 10 had at least one cognitive impact, such as problems with memory, concentration or fatigue. With three-quarters of stroke survivors also struggling with their mental health, it is clear that every stroke survivor is at high risk of developing a mental health condition.

Everyone deserves to live the best life they can after stroke. SameYou are working to increase the support people need on their recovery pathway and we are proud to partner with the Stroke Association as a key charity working across the UK to rebuild lives after stroke. By joining forces to invest in research we hope to transform stroke rehabilitation services, and to tackle the stigma of stroke by raising awareness of this devastating condition in young adults.

The road to recovery following a stroke is a long one. Hidden effects do not just disappear. Stroke survivors have to adapt and alter the way they do things to cope. Alisha, 29 from London tells her personal story in the Lived Experience Report and is a great example of the courage and determination required on your journey to recovery:

Alisha, 29 from London, had a severe stroke in 2016 which left her unable to read, write, speak or walk. Alisha, who was a primary school teacher when she had her stroke, spent five months in hospital recovering.

She said: “Within an instant, I’d lost everything. I didn’t know any words; hello, goodbye, mum, dad – they’d all gone.

“I had no idea what had happened to me, and I don’t think I realised in hospital just how serious it was. I smiled and nodded to nurses and doctors, and everyone would tell me how well I looked. They didn’t realise just how much I was hiding behind my smile; I remember being so confused by everything going on around me.

“When I got home my parents had put everything into place. I was receiving speech therapy three times a week and also had regular physiotherapy and an occupational therapist teaching me daily living skills. My days were full but I started feeling frustrated and fed up, I didn’t understand why I couldn’t do most of the things as before. I was home now and I felt better and I should be back to normal, but it wasn’t that simple. It started to get me down.

“My frustration led me to being angry and I wanted to lash out or hurt myself. I wished I was in another place but with the help from family and professionals I learnt to control these anxiety attacks, and I wanted to be positive and motivated the way I used to be. I did not want to become an angry depressed soul. I persevered and I was determined to get through this and do more and more.

Alisha now attends the Stroke Association’s support group at Harrow Arts Centre, and has speech and language therapy twice a week.

“Speech and language therapy has been a huge help to my recovery, but it’s really hard work. I’ve had to completely start from scratch. The Stroke Association’s local support group has helped me to meet other stroke survivors who are in a similar position to me, which has been really helpful.

“It’s not easy and life is never the same but giving up should not be an option because improvement, however small, does keep happening. Very few people understand the mental effects of stroke because you may look fine on the outside, but they don’t realise the internal struggle.”

The report suggests that change can’t come soon enough. It’s a great piece of evidence that will help further raise awareness of the unmet needs of people living with stroke and we hope it will influence a change in the vital support needed to help them cope with the hidden effects that can turn people’s lives upside down.

SameYou is acting as a catalyst for change, supporting leading neurorehabilitation initiatives and we urge everyone to read this report.

To read the full report, go to: https://www.stroke.org.uk/lived-experience-of-stroke-report