By Emma Collins, Encephalitis International
Navigating life after a brain injury, such as encephalitis, carries unknowns and uncertainties for those affected as well as their family and friends. Recent research has discussed the social isolation experienced by those with an acquired brain injury (ABI), and the importance of social connection to reduce isolation. This isolation is likely to be well known by those directly affected, confounded by the disability often left by ABIs and the social stigma that can be attached to this. To help overcome this, it is vital that patients and families have access to emotional and social support in the weeks, months, and years following brain injury.
It is common for brain injury to lead to long-term fatigue, depression, anxiety, and sleep problems, effects that are not currently sufficiently captured in patient outcome measures. Clinical rehabilitation and mental health services are vital components to supporting patients and their families and provide vital aftercare following acute treatment. Outside of these medical services, however, it is important that people do not feel alone. There are various ways in which people with ABIs can find connection, build their confidence, and find a community of other people affected by ABIs. These provide ways to hear from, speak to, and learn from others.
All quotes in this post were provided by encephalitis survivors and caregivers via Encephalitis International.
Hearing from others
“It is, in a way, ‘good’ to hear of some shared, common experiences.”
The journey to recovery varies from person to person and often requires an adjustment period for those affected and their families. Family dynamics can change as family members may become caregivers. Hearing other people’s experiences can help patients to feel seen, heard, and less alone. Sharing stories and experiences of life after brain injury is one way to access emotional and social support.
Read people’s real-life stories of brain injury, including recovery, to understand experiences in patients’ own words.
Hear people’s stories in podcasts and videos, as an accessible way to feel connected to the local community or even across the globe. Patient organisations have a variety of podcasts and videos that provide alternative formats to hear from others.
Sharing stories not only gives a voice to brain injury survivors but also provides an outlet for people who have lost someone to share their memories and raise awareness of the potential severity of brain injury. By writing their story, people can help not only themselves but also others to find connection and the courage to share their own experience.
Speaking to others
“The meeting was really useful. It’s always good to know that it’s not just me.”
Stories do not have to be written to be shared. Connecting with others, whether online or in person, provides the opportunity to reduce isolation, feel motivated, and be inspired by others’ stories. This is especially vital given that research suggests loneliness and a lack of connection are significant in adults recovering from ABIs.
Online forums can spark conversations with others.
Support groups, whether international or local, facilitate meeting others in a safe and supported environment. Reach out to your nearest brain injury patient organisation to discover various ways to find a connection with others.
In-person events can encourage people affected to rebuild confidence during recovery and improve their overall well-being. As a brain injury survivor has shared: “Don’t avoid going out or socialising. Even if it’s a cup of tea at a friend’s house, it’s good for your mental health.”
Connection with others in a way that is accessible can make a positive difference in day-to-day life. Connection can help remind people affected that there are others who understand and are willing to offer a listening ear and friendly voice.
“It really helped just to talk to someone who understood.”
“It was a nice safe space to hear others’ stories and share mine.”
Learning from others
“Look for resources that help to explain your condition to others if you struggle.”
Sharing stories and speaking to others often opens the gateway to information and resources that are valuable when looking for a way forward following a brain injury. Patient organisations can provide helpful resources for patients, family members, parents, and carers to help them to navigate the unknowns of brain injury. This often includes support lines via email or phone to seek advice and guidance and find a starting point for support.
Support is available not only for patients but also for caregivers. Caregivers play an invaluable role in the road to recovery, and brain injury often has a life-changing impact on families:
“… I found it very hard. I was having speech therapy, it was hard to speak, and to actually express myself…at that point, probably my husband would have explained things better… we’re relying on our family.”
This is especially important given the potential impact that brain injuries can have on family relationships.
Information resources are available online from patient organisations for caregivers, and their voices can be heard in caregiver stories—it is just as important for caregivers to also care for themselves. Recent research continues to highlight the potential for caregiver stress and the importance of multidisciplinary care of patients to enhance recovery and quality of life for patients and their families.
“The resources…were not only immensely helpful but also gave me and my family clarity and reassurance when I needed it most. In fact, there were a couple of times where I was able to signpost some of the latest research to the neuro doctor in India.”
Connection builds community
Supporting others and seeking support for patients or their caregivers helps to develop and strengthen networks and communities around the world. Life following a brain injury is challenging and often described as a “rollercoaster.” It is unlikely that recovery will be straightforward, and reaching out to others can help to reduce worry and anxiety. A community is built from family, friends, and those farther away who are on a similar path to one another. Community provides support and builds a network to reduce isolation. Reaching out to others can help both the individual affected and others feel less alone.
“I highly recommend this group to any young person who has experienced encephalitis, as the journey to recovery can often feel isolating. This group has given me a welcoming community of peers who understand my experiences and provide a supportive, judgment-free space to connect!”