Social life

After a brain injury, many people struggle to maintain a social life and social relationships. Socialization is incredibly important for a person’s overall health and well-being. A lack of socialization leads to feelings like loneliness and low self-esteem. Negative effects on mental health from lack of socialization can lead to more problems such as paying less attention to physical health and rehabilitation.

Socializing after a brain injury can be challenging, but it is not impossible. There are ways to interact with others that can create a rich and fulfilling social life while still being mindful of changing abilities and needs.

Topics in this section include:

Socializing challenges

The following are some common challenges that can come up with social settings.

Aphasia

Aphasia is a cognitive language disorder and occurs when the language center of the brain is affected. When a person has aphasia, they may experience difficulties with speech, understanding conversation, reading and writing. This can make socializing very difficult.

Some ways to help in social situations include [1]:

  • Ask people to repeat themselves or speak slowly if you didn’t understand them
  • Be patient and take your time speaking
  • Converse in quiet environments
  • If you struggle with speech, try writing or drawing what you want to say
  • Pointing
  • Using hand gestures

Dysarthria/dysphagia

Dysarthria is when a person has difficulty speaking due to the impairment of the muscles or nerves that supply the muscles that control speech. This could be due to muscle weakness, paralysis or lack of muscle coordination.

Effects of dysarthria include [2]:

  • Difficulty with clear annunciation
  • Difficulty with slow or fast speech
  • Slurred speech
  • Soft volume – inability to speak louder volumes

Some ways to cope with dysarthria in social situations include:

  • Being patient with yourself and taking your time
  • Repeat yourself if necessary
  • Try hand gestures
  • Write down words or use an alphabet board
  • Work with a speech language pathologist

Aprosodia

A less common communication challenge is called aprosodia. This means that a person is not able to reflect emotion or feeling into their tone of voice or is not able to understand it in others. This can make speaking with others difficult because lots of emotions are conveyed through tone of voice.

Some ways to cope with aprosodia include:

  • Asking others to avoid sarcasm or explain jokes to avoid confusion
  • Explain to others how you’re feeling
  • Work with a speech therapist on inflection exercises

Confabulation

Some individuals with an acquired brain injury process information in a way that makes it hard for them to distinguish between what’s real and what’s not. Details are twisted or made up, leading to stories that are untrue – but the person doesn’t realize they are including false details. Confabulation is often called ‘honest lying’ because the person believes the lie.

This can lead to difficulty socializing, particularly if other people don’t know that the person with a brain injury isn’t aware they’re sharing false details. It can frustrate people, which can lead to conflict.

If you want to be as accurate as possible in conversation, you can:

  • Ask for confirmation about story details
  • Ask others to be patient with you as you tell stories
  • Have a caregiver with you who is familiar with confabulation and can help you navigate social conversation
  • Keep a journal of your day – this will give you an accurate record of events you can refer to at later times

Disinhibition

In some cases, a person with frontal lobe brain damage may have ‘no filter’. This means they say or do whatever they’re thinking without considering factors like environment, audience or consequences of their words or actions. This can lead to oversharing of information, inappropriate conversation and insensitivity towards others. This is called disinhibition.

The best way to avoid inappropriate sharing is to practice deep breathing and use reminders to check in with yourself. You can also:

  • Ask caregivers to use signals to help you focus
  • Ask for second opinions on topics or decisions you’ve made
  • Practice conversations before social engagements

Environmental factors

Socialization can often happen in environments that can be overwhelming or irritating for someone with a brain injury. Depending on the effects of your injury, some social settings can be:

  • Inaccessible
  • Require interaction with staff/strangers on a frequent basis
  • Require too much physical exertion
  • Restrictive
  • Too loud
  • Too bright
  • Too crowded

If you’re experiencing environmental barriers, you’re less likely to engage in social interactions. Some ways to cope with social activities and environments include:

  • Asking in advance if the space has accommodations for accessibility. Businesses are becoming more aware of the need for standards of accessibility for all, not just physical disabilities
  • Limiting the number of people you interact with at first Looking for sensory-friendly spaces
  • Starting with shorter social engagements
  • Taking breaks

Have a caregiver with you to help with navigating environments or explain what you need when you engage with people socially.

Fatigue

Fatigue can be both physical and cognitive. If you experience fatigue often, you may be tempted to reject social invitations. While not every social situation will be the right fit for you, fatigue does not have to prevent you from socializing. By understanding fatigue, how it affects you, and using management strategies to reduce its impact, you’ll be able to engage in social events.

Feeling like a burden

After a brain injury, many individuals struggle with feeling like a burden to their loved ones. People may feel that they are not worth making accommodations for or that their friends/family may have more fun without them. This can lead to feelings of depression and a person may not invite others to be social or accept social invitations.

It’s important to discuss these feelings with your caregiver, family, a psychologist or a therapist. Sharing how you’re feeling can not only help you but can help the people closest to you who may not realize the best ways to include you.

Lack of awareness

Lack of awareness can refer to multiple areas of socialization, including [3]:

  • Appropriate conversation
  • Interrupting
  • Misunderstanding jokes
  • Not being able to acknowledge social difficulties
  • Personal space

Ways to cope with lack of awareness include:

  • Asking for clarification if there’s something you don’t understand
  • Having a set of signals with a friend or caregiver that can be used at events
  • Rehearsing social interactions with a caregiver or family member
  • Taking breaks from conversation

Reading facial and verbal cues

In social situations, people use verbal and facial cues to convey how they feel and what they mean. A person with a brain injury may be unable to read or may misinterpret facial and verbal cues. This is called social-emotional agnosia [4]. Social-emotional agnosia can result in awkward or inappropriate responses or actions during social interactions.

Ways to help with facial and verbal cues include:

  • Asking friends to explain what you don’t understand
  • Having a caregiver or close friend attend social events with you to help you interpret
  • Rehearsing cues with a friend or caregiver
  • Using cue cards with pictures to practice recognizing facial cues

Unable to start or follow conversation

Often brain injury survivors have difficulty following a conversation, especially if a person is talking too fast, the environment is too loud, or there are multiple people speaking [5]. If you struggle with conversation, there are some ways to cope:

  • Ask for people to speak slowly, clearly and one at a time
  • Ask to have social engagements in quiet, uncrowded environments
  • Create cue cards with conversation topics
  • Rehearse conversations with a friend or caregiver

Dangers of social isolation

Humans are social by nature, and a lack of socialization can lead to loneliness, low self-esteem, reduced emotional functionality, mental health struggles and depression. Many individuals with brain injury may have fewer social experiences, leading to increased social isolation. This can be caused by:

  • Social difficulties
  • A lack of accessibility
  • A feeling that people don’t understand brain injury
  • Others having difficulty adjusting to the new you
  • Anxiety and depression
  • Physical barriers

All of these can make it even more difficult to reach out to others – or have others reach out to you. It’s a vicious cycle that can be difficult to break. But there are ways you can combat social isolation.

  • Set up regular calls with family, friends, and loved ones
  • Keep in touch with your local brain injury association – they run webinars, peer mentoring, events, and other activities that promote socialization
  • Leave your house when you can – even fresh air and seeing people in your neighbourhood can help
  • Use technology to stay close with others
  • Talk to mental health professionals if you are struggling

Depression

Depression [6] is a common emotion experienced after a brain injury. Adjusting to your new self and your experiences is difficult and can result in elevated stress and feelings of depression.

Symptoms of depression include:

  • Changes in eating patterns
  • Changes in sleep
  • Changes in weight
  • Feelings of sadness
  • Focus on the emotions of loss and grief
  • Helplessness, worthlessness and guilt
  • Irritability
  • Less interest or pleasure in objects or activities previously enjoyed
  • Loss of sexual interest
  • Physical aches and pains
  • Poor concentration
  • Tiredness or loss of energy
  • Thoughts of death and suicide
  • Withdrawing from friends and family

Please note: You may have some of these symptoms and not have depression. Talk to a doctor, neuropsychologist or psychologist about any emotional or physical symptoms you may be experiencing.

If you are diagnosed with depression, this can have an impact on your recovery. You may be more fatigued, have trouble engaging with people, or find participating in rehabilitation more difficult. You also may have trouble recognizing when you’re depressed and not have the skills to cope with it in a constructive way. The most common treatments for depression are prescribed medications and talk therapy.

Some actions you can take to cope with depression include:

  • Avoid substance use
  • Eating a balanced diet
  • Exercising
  • Find enjoyable hobbies
  • Stick to an appropriate sleep schedule
  • Try mindful activities like meditation

→ Information on suicide hotlines and crisis services.

[1] Ontario Brain Injury Association

[2] Ontario Brain Injury Association

[3] CEMM Library

[4] Gloor, 1960

[5] msktc.org

[6] Canadian Mental Health Association