‘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).
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:
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:
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.
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:
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).
“When I was among other TBI survivors, we swapped stories and swapped different techniques that we used to be successful at different things, or what we’ve encountered. So there’s a lot of validation with it – feeling like I’m not alone – and learning opportunities.”
- Person with TBI (96)
“We talked a lot about how grateful we are about where we are in our lives, alive. We learn from each other. We speak to each other. This is what I’m grateful for, this is what I’m going through, things like that. It’s also great to experience that [sense of community] because if you had to just lie there, you feel sorry for yourself.”
- Person with TBI (26)
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:
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:
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 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.
“We used to be husband and wife, equal partners. Now I’m like her kid. I frustrate her terribly. I don’t hold up my end anymore. That’s not romantic.”
- Person with TBI (65)
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.
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.
“I used to know my husband really well; I always knew what he was thinking and what he needed. I could anticipate his feelings, needs and desires. I’m not on the ball like I used to be.”
- Person with TBI (65)
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).
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.
“It does get better. You find the new dance, the new rhythm between you. It’s a new relationship but you find your way.”
- Person with TBI (65)
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):
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:
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.