Hearing and sharing lived experiences helps people feel less alone.

Peer support and community groups can rebuild confidence and well-being.

Caregivers also need support to navigate the challenges of recovery.

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.

“It is, in a way, ‘good’ to hear of some shared, common experiences.”

“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........

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