Module 12: Social participation and connection

Being part of things

‘Being part of things’ means to be actively integrated and connected with other people and the community. This was introduced in Module 11: Finding meaning in life after TBI.

As you go through rehab, and especially as you prepare to return home, your team will strongly encourage you to be involved in activities that promote social and community participation. This is because scientists have found that connecting with other people is one of the most important factors in leading a long and meaningful life – for people across all different cultures and age groups (93), as well as people with TBI (75).

What is social participation?

Social participation means to take part in activities with other people. This can include activities with your family, friends, colleagues, peers or even complete strangers. The purpose of social participation is to enjoy yourself and build relationships with others (94). Some social activities include:

• Visiting family and friends,
• Going to places for fun, like the beach or shopping,
• Taking part in hobbies, like arts and crafts or dancing,
• Playing sport or games with others (including online),
• Joining a support group.

What is community participation?

Community participation means to take part in activities with others that benefit a group of people, the community or society. Some community participation activities include:

• Volunteering,
• Working (paid employment),
• Education,
• Joining community groups,
• Taking part in community events.

Community participation is important in helping people find a sense of purpose and accomplishment in life (1). It can also be a great way to meet and build relationships with people who share similar experiences and goals.

Feeling connected to others

Social and community participation are important because they can help you to build social connectedness. Social connectedness is the feeling of ‘getting along’ or ‘clicking’ with other people (95) and can be described as feeling:

• Accepted,
• Understood,
• Seen,
• Included,
• Respected,
• Valued, Feeling like you belong.

Many people with TBI have said that social connectedness is the one thing they want and value the most in life after injury (75). This means having strong relationships with a group of people with whom they can share feelings, problems and ideas without feeling embarrassed or judged (83). In particular, having reciprocal relationships is very important. Being able to contribute to the lives of others and feeling valued is just as important as receiving support from others (75).

Why is social connectedness important?

Finding opportunities to build social connectedness is very important after TBI (88, 97). Being connected with other people and the community can help you to:

• Build your personal identity – this is because humans tend to build our sense of self through our perceived place or role in society, including group memberships (81).
• Become more accepting of yourself as you experience acceptance and understanding from others with shared experiences.
• Feel valued and seen by helping others with similar experiences,
• Learn skills and resources to cope with TBI,
• Build motivation,
• Improve your general health and well-being, including longer life expectancy, better mental and physical health, greater immunity, lower stress, and protection against cognitive decline (92, 93).

Challenges with social connectedness

Many people with TBI struggle with finding and maintaining social connections. TBI can cause changes to your social skills that makes it harder to interact with others, including:

• Keeping track of conversations,
• Understanding another person’s point of view,
• Understanding another person’s emotions,
• Picking up on social cues, such as body language, etc?
• Self-regulation including controlling unwanted or inappropriate responses or behaviours,
• Recognising personal boundaries.

Because of these changes, you might offend or come into conflict with other people during social interactions when you do not want to or mean to. The people you were interacting with might judge you negatively based on your behaviour. This might make you feel ashamed or embarrassed. You might feel like it’s easier to not put yourself out there and avoid social situations in future. This is a common experience for people with TBI (83, 100).

Over time, avoiding social situations can lead to social isolation. Social isolation is when a person has limited contacted with other people in society and can lead to many negative outcomes (101). Try not to let these worries hold you back from engaging with others. Social skills training can help you to learn strategies to make social interactions less stressful.

Romantic relationships and sexual intimacy after TBI

Romantic relationships and sexual intimacy are an important source of social connectedness for most people. Whether you already have a partner or are looking to find one, the challenges you face after your TBI may impact your romantic relationships.

If you have the same partner as before injury, you may face changes in relationship roles and dynamics, personality and behavioural changes, changes in sexual intimacy, and grief over the loss of the previous relationship. These are described in detail below.

Changes in relationship roles and dynamics

If your partner becomes your primary caregiver after your TBI, it’s common to experience a shift in your relationship from romantic partners to more of a patient-caregiver or parent-child dynamic during recovery (65). These relationship changes are the most apparent when you first return home after being discharged from hospital or rehab. You might feel shame or guilt that your partner has to take on additional responsibilities to support you. It will take some time to adjust to these changes.

Personality and behavioural changes

TBI can cause changes to your personality and behaviour. It can also cause changes to your communication skills and social skills that make it harder for you to understand your partner’s perspective and emotions. You might also feel that your partner’s personality or behaviour towards you has changed after injury. These changes are usually more challenging for a couple to deal with than physical changes.

Changes in sexual intimacy

Sexual intimacy is an important aspect of human functioning for many people. Changes in sexual functioning are very common after TBI (105) due to physiological changes (pain, changes in arousal), psychological changes (poor self-esteem, feelings of unattractiveness, performance anxiety), and behavioural changes (difficulties with initiation, inappropriate sexual behaviours).

Grief over the loss of the previous relationship

Because of these relationship changes, many couples find themselves grieving the loss of the relationship they shared before TBI (106). This includes grief over the future and the loss of any shared life goals or plans that may no longer be possible after TBI.

Remember that your partner can join you in some parts of your rehab (if you wish). Different therapies are available to help you and your loved one work together.

Working with a speech pathologist together can help your loved one learn how best to communicate with you. Seeing a psychologist or counsellor together with your partner can also be helpful. There are family-centered therapies available which focus not only on your needs, but also on your partner’s needs.

Strategies to improve romantic relationships

It will take a lot of work and communication to keep your relationship strong. If you are experiencing significant relationship difficulties, working with a professional can help yourself and your partner to communicate your thoughts and feelings and find ways to move forward with your relationship after TBI.

The following are some strategies that can help to improve romantic relationships after TBI (65):

• Communicate openly with patience and without a negative attitude,
• Repeat back or summarise what you think the other person is saying – this helps to check for understanding and prevent miscommunication,
• Schedule dates and romantic activities. This can help you to separate the patient-caregiver role from your role as romantic partners,
• Scheduling dates or intimacy can also lessen the cognitive stress of initiation and decision-making and ease the romance back into the relationship,
• Appreciate each other’s effort,
• Adjust expectations of the relationship.

I’m looking to meet someone new after my TBI

If you are looking to start dating or find a new partner after injury, you will have some of the same challenges as someone who has a partner who knew them before their TBI. Because of your TBI, you may find forming and keeping romantic relationships challenging due to changes to your communication skills, social skills, personality and behaviour, and sexual functioning.

You may also encounter some additional challenges when getting to know someone new.

Getting to know someone new after TBI means that at some point, you will need to decide if you want to disclose your injury to this person. Many people tend not to disclose ‘invisible disabilities’ including cognitive or psychological conditions because they feel as though people will reject them or look down on them (107).

Remember that the decision to disclose your TBI is entirely up to you, and that not everyone needs to know about your injury. But if you are looking to find a long-term partner, disclosure will become necessary at some point. These strategies may be helpful when you decide to disclose your TBI to someone new:

• Make your story positive and state your strength – for example “I am a survivor”,
• Rehearse what you want to say,
• Writing down your story can help you to be clear and lets you revise your message.

Also be careful to not share too much information too early on when meeting new people – offline and online. There are people out there who may take advantage of your limitations for personal or financial gain.

The following are two organisations that can assist you to stay safe while navigating romantic and sexual relationships after TBI.

PASH Consultancy is a support service based in Perth, Western Australia for people living with disability. PASH has two main areas of focus; Education and Events. Our PASH Education program provides holistic sexual, relational and social education to individuals, families, support networks and service providers. PASH Connections provide inclusive social and dating events for people living with disability.

https://www.pashconsultancy.com 

Sexuality Education Counselling and Consultancy Agency (SECCA) enriches the lives of people with disabilities through education and therapeutic support, in relation to sexuality and relationships.

https://www.secca.org.au

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