Module 9: Social life and relationships

Changes to social life and relationships after TBI

It has been a few months since your injury, and you may be wanting to reconnect with friends, family and social connections. After your injury, you may have experienced changes to your usual social and occupational life and relationships. This might include:

• Stopping work or school for a period of time,
• Moving to a residential rehab facility away from your home, family and friends,
• Not being able to take part in recreational activities you enjoy due to physical or cognitive limitations,
• Changes in social roles and dynamics due to increased care needs.

Whether you’re doing rehab at a dedicated residential facility, through an outpatient service, or with therapists coming to your home, rehab will take up many hours of your week. This means that you will have less time for social interactions and activities. Consequently, many people with TBI find that the people around them and their social supports also change after injury.

This module will help you to understand some of the changes and challenges around social relationships that you might experience after TBI.

Start with a time out for yourself

Many people with TBI take a time out from social interactions after returning home from hospital (59). This means they choose to withdraw or remove themselves from encounters and interactions with others. This period of social withdrawal might be for a few months or longer.

Social withdrawal is a healthy part of early recovery. Some reasons for needing a time out can include:

• Processing what has happened,
• Think about life goals and priorities,
• Giving yourself time and privacy to focus on rehabilitation and recovery,
• Rest. Rehab is hard work and can make you really tired. On top of this, fatigue and sleep disturbances are common after TBI (53, 54) which can leave you feeling low in energy.

Your family and friends will naturally worry about you when you choose to withdraw socially for a period of time.

When you need time for yourself, a phrase such as “I’m OK, I just to need to shut down for a bit” can be helpful to let them know that you need some time alone.

You can also create a safe word or code to signal to your family when you need a break.

While social withdrawal is a healthy part of recovery, it can sometimes become unhealthy. This happens in cases where social withdrawal is prolonged or when the reasons for not connecting with others are due to excessive worry or anxiety.

Some signs of unhealthy social withdrawal include:

• Loss of interest or enjoyment in social interactions,
• Avoiding reminders of life before injury,
• Resentment of “healthy” people,
• Reduced confidence and insecurities around physical injuries or limitations,
• Fear of being judged or rejected.

Prolonged loss of interest or enjoyment in previously enjoyed activities is a symptom of depression (44). Avoidance or resentment of healthy people can indicate unresolved grief. While it’s normal to have some worry after TBI, avoiding social interactions for a prolonged period due to excessive worry or fears can be a symptom of an anxiety disorder.

Going back to Module 8: Mood, behaviour and mental health can help you to recognise the signs and symptoms of common mood and mental health problems after TBI, and how to get help.

Changes to social skills after TBI

Did you know that many complex skills are needed to engage in social interactions with others? You might remember from Module 4: Communicating your needs that some of these skills include being able to:

• Listen to others (auditory processing),
• Understand what’s being said (process verbal information)),
• Take in visual information or cues (process non-verbal information)),
• Remember previous conversations or events (short- and long-term memory),
• Come up with a response (produce communication),
• Keep track of the conversation (working memory, attention).

The brain does all these steps so quickly that most people don’t realise how much work is needed in a social interaction. Many people with TBI have trouble with social skills after injury (62). The specific difficulties vary, but can include the following:

• Understanding another person’s point of view,
• Understanding facial expressions and body language,
• Understanding tone of voice,
• Recognising sarcasm or jokes,
• Keeping track of conversations,
• Sticking to the topic of the conversation,
• Inhibiting unwanted or inappropriate emotions and behaviours (e.g. mood swings, angry outbursts, and inappropriate sexual expression),
• Recognising personal boundaries (e.g. personal space and physical contact),
• Being distracted/overwhelmed by sensory stimulation in the environment (e.g. fluorescent lighting and background noise).

This can make it harder to keep your relationships and make new ones. It may also be harder for you to relate to other people, including healthcare staff, your rehab team, coworkers, peers and people in the community.

When a social interaction becomes overwhelming, let others know you need a break by saying “I need a time out”, “I need a break” or “I need to shut down for a bit”.

Did you know that social skills training is available through community rehab to help people with TBI identify and rebuild lost social skills? Through this program, you will learn tips and strategies like the one above to make social interactions more manageable and enjoyable for you.

Have a discussion with your family, rehab coordinator, and healthcare team if this is something you would like to do as part of your rehab program. It is important to take the opportunity to practice social skills and relationship even though it is difficult.

Changes to social relationships after TBI

It is common for people with TBI to report that their social circle has become smaller after injury (59). Relationship breakdowns can happen for several reasons, which may include:

• Fewer opportunities for social interactions,
• Motivation, ability, and effort at maintaining relationships,
• Personality or behavioural changes,
• Changes in social roles and dynamics,
• Caregiver burden and burnout.

Many people with TBI have said that their family or friends comment that they’ve changed and are no longer the same person as they were before injury (59). Comments such as “I miss the old you” or “this isn’t who you were before” can be very upsetting to a person with TBI.

These comments usually come from a lack of understanding of the cognitive, behavioural and psychosocial limitations that are caused by TBI. People will be able to see the physical injuries you might have after your TBI, but the cognitive and psychological changes are harder to see. Some people have said that the cognitive and mental impairments of a TBI can feel like having an invisible disease (1). Your family and friends may not realise that changes to your brain chemistry during injury can cause changes to your personality or behaviour too (64).

In addition, there is a lack of public understanding on the long-lasting effects of TBI. Your family and friends may not be aware of or prepared for the long recovery journey. They might be around to support you in the early days after injury but then reduce contact with you as time goes on. This can be upsetting and lead to a person with TBI feeling isolated.

Research shows that TBI affects not only the person with TBI, but their whole family (66). Your family must make many changes to be able to support and care for you during your recovery journey. This might mean that your partner, parents or sometimes even your children need to take on a new role as your caregiver. Being a caregiver is not easy and can place a lot of stress on your family member (66).

Your family members and loved ones also experience loss and grief after your injury. They may be grieving the loss of your previous relationship or previous life together. Sometimes it can become too much.

Working together to keep your relationships strong

When people do not communicate well together, relationships change and fall apart. This can be a very stressful time for everyone, including your loved ones and you.

They may not be able to cope with life after your injury and may need some support as well. It is important to focus on working together as a unit and communicate as much as possible.

Your family can join you in some parts of your rehab (if you wish). Different therapies are available to help you and your loved ones work together.

Working with a speech pathologist together can help your loved ones learn how best to communicate with you.

Seeing a clinical psychologist, counselling psychologist, or counsellor together with your family can also be helpful. There are family-centred therapies available which focus not only on your needs as the person with TBI, but also on your family’s needs.

References

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