Support group & Network changing routine

If you have been attending a support group, or if you belong to a support network – over time you may be feeling like you might like to make a change to the routine.

Obtaining support through others is an important aspect of brain injury recovery, and can take shape in many ways.  At the same time, it provides social contact as well as an opportunity for you to encourage others.

Regardless of what your situation is, just as it is important to carefully consider your reasons for wanting to join a support group – it is also important to consider your reasons for wanting to change this routine.

It may be helpful to develop a pros and cons list, and to think about some of the factors that may be leading you to want this change.  Some of these factors may include for example:

  • Why did you join this group initially?
  • Have any of the original conditions changed for you?
  • Do you believe you have talked as much as you are able to about your situation at this stage?
  • Does it seem that you are repeating yourself?
  • Do you need some time away from the group to process what you are learning?
  • Are you finding the schedule is too demanding?
  • Are you learning new things?
  • Are you hearing new information?
  • Are you finding that you are leaving feeling drained and/or down?
  • Are you wondering if your energy/effort might be re-directed elsewhere at the moment?
  • Are you beginning to feel that you do not want or need to attend any longer?
  • Have you reached a point where you are talking about goals and hope for the future, versus having the time and energy to practice and apply what you have been learning?
  • Has attending become a habit?
  • Perhaps someone else can benefit from your spot.
  • The social contact is positive for you.
  • It’s valuable for you to have a routine and a reason to get up and out to attend
  • Do you feel you are genuinely offering support and encouragement to others?
  • Have you been connecting with others who are sharing similar experiences?
  • Some in the group have moved on, others have remained
  • Overall, are you receiving positive messages that are moving you forward?
  • Is there an opportunity to apply any new strategies you are learning, and bring this information and awareness back to the group to debrief and/or discuss?
  • Are there other options available for you to obtain support that you might like to explore?
  • Are the people leading your group/network trusted sources?
  • If applicable, have you discussed this decision with your medical/other team?

If you are thinking about changing your routine:

  • How might you approach this?
  • Must it be all in or nothing?
  • Can your attendance, and/or time invested be modified to better suit your situation or schedule?
  • Who should you talk to about this?
  • Can you take some time to carefully consider your options before making a decision?
  • Can you test out/have a trial period to implement a modified schedule?
  • If you stop attending, should you find you are missing and needing the contact and support, can you re-join or reach out to someone?

There are a range of considerations involved in joining a support group and eventually in deciding whether to change up your routine.

Be sure to take the time necessary to consider your options carefully.  Talk to the right people, and on balance decide if attending this group brings you positive reinforcement.

Tips for exploring the new normal

Self-identity after a brain injury is fluid. While things have changed and that’s hard, with time, patience and support you have the opportunity to explore your new identity and shape your new normal.

Ask for positive reinforcement

Positive reinforcement from others is helpful – everyone needs encouragement, especially during recovery. You can also give yourself positive reinforcement by writing down encouraging statements or recording the positive parts of your day on an audio device (like a smartphone).

Attend therapy

Therapy is an excellent way to explore your feelings and your self-identity after brain injury. A psychologist or psychiatrist will help you work through what you’re feeling, focus on positive progress, and adjust to your new normal.

Be patient with yourself and others

Finding a new normal and re-forming a self-identity doesn’t happen overnight. You’re going to have a lot of ups and downs. Reflect on what can you do now that you couldn’t do a month or year ago, rather than always compare your current self to your pre-injury self. It’s difficult but being patient with yourself is one of the most important things you can do for your mental/emotional health and well-being.

It’s also important to be patient with others, especially families and caregivers. Everyone is adjusting to the changes in relationships and responsibilities. It’s normal to feel frustrated with others – you’re going through a lot. But try to remember that their whole world has changed as well, and they need your support and love too.

Celebrate your wins

It’s important to recognize your accomplishments, even the smaller ones: they are worth recognizing. For example, can you sometimes remember things without looking at your notes? Or control a strong emotion? Or feel a little more stable on your feet? Celebrating your wins will not only improve your mood, but it will reinforce how far you have come.

Find the familiar

While you shouldn’t compare where you are now to where you were before the injury, it’s okay to take comfort in the aspects of yourself you recognize or are familiar after your brain injury. It’s reassuring, and it’s helpful when building your new normal.

Try new things

Part of living in the new normal is trying new things and learning what works for you and what doesn’t. This can be done through rehabilitation or simply getting out there through community classes, social groups, or trying new hobbies. Recovery does not have to mean get your old life back as much as possible. It can also mean bringing new valued activities into your life.

Adjusting to the new normal

After a brain injury, things may never go back to the way they were. It will take some time to cope with that fact and adjust to what many people call the ‘new normal’. The new normal may include your routines and abilities.

The term ‘new normal’ may not be the one you want to use. Brain injury recovery is challenging and full of ups and downs: normal may not be the word you would use to describe new routines or realities. We are using the term ‘new normal’ because it is widely used by healthcare professionals, caregivers, and individuals living with brain injury. 

Factors impacting the new normal

Recovery is different for everyone – that’s also something that doesn’t have a sense of normal. Recovery and establishing the new normal will be impacted by several factors, including:

  • Habits from before you were injured. Our habits – good or bad – are the building blocks of our daily life. Habits that you carry forward into your recovery or that you pick up after your injury will mold your day-to-day routines
  • Location and severity of injury. The location and severity of the brain injury will play a large part in determining what routines will become a part of your new normal
  • Rehabilitation. Rehabilitation is an important part of brain injury recovery and can have an impact on your new normal depending on the kinds of rehabilitation you’re doing, how much rehabilitation you’re doing, and your commitment to putting rehabilitation techniques into practice outside of appointments

It took a long time to figure out what I needed…

The new normal will not happen right away

When you first sustain your injury, you may feel like you’re getting too much attention from your healthcare team, family, and friends. But eventually you won’t have as many tests or appointments, and you might feel a little invisible. Many people feel stuck in place and become more physically and socially isolated. But socialization and interacting with others is not only important to your mental health, but in establishing your new routines and finding out how your life looks moving forward.

The new normal isn’t something that will happen when you leave the hospital or rehabilitation centre. Chances are your new normal will change several times, and that’s okay. It’s a long process often lasting years that involves rehabilitation, support from family and friends, and coping with the changes you’re experiencing. It’s important to be patient with yourself and the people involved in your recovery as you all discover it together.

I was told things would get better over time

If you’re having some trouble coping with recovery and the changes you’re experiencing, you may want to consider finding support groups or a therapist. Support groups and local brain injury associations are an incredible resource. Other people who have gone through similar experiences can share what they’ve learned and offer advice. Therapists can offer the same kind of support. The important thing to remember is that there is no right or wrong way to move through recovery and establish new routines. Everything you’re feeling is valid, and you only need to focus on doing what works for you.

Disclaimer: There is no shortage of web-based online medical diagnostic tools, self-help or support groups, or sites that make unsubstantiated claims around diagnosis, treatment and recovery. Please note these sources may not be evidence-based, regulated or moderated properly and it is encouraged individuals seek advice and recommendations regarding diagnosis, treatment and symptom management from a regulated healthcare professional such as a physician or nurse practitioner. Individuals should be cautioned about sites that make any of the following statements or claims that:

  • The product or service promises a quick fix
  • Sound too good to be true
  • Are dramatic or sweeping and are not supported by reputable medical and scientific organizations.
  • Use of terminology such as “research is currently underway” or “preliminary research results” which indicate there is no current research.
  • The results or recommendations of product or treatment are based on a single or small number of case studies and has not been peer-reviewed by external experts
  • Use of testimonials from celebrities or previous clients/patients that are anecdotal and not evidence-based 

Always proceed with caution and with the advice of your medical team. 

How family & friends are impacted

Brain injury impacts a family and community, not just the injured person. This includes their routines and their emotions.

Brain injury is unexpected for everyone, including family members. They may experience a period of shock when they find out about the injury. They may also be shocked when they see the impact to your behaviours, emotions, and abilities. Shock may make it hard for them to see how significantly the brain injury has affected you. Friends and family members are trying to understand what’s happened, may have trouble processing their thoughts, and could even feel physical fatigue. But shock is temporary: it will vary for different people, but it will go away. Make sure to talk with your family about what’s happening – it’s good for all of you to be open and communicate about brain injury.
Frustration often is in a cycle with guilt, hope, and helplessness. Friends and family may experience frustration with themselves, with the situation, or even with you. It’s important to remember not to take this frustration personally; they are doing their best to be patient and to adapt, but nobody’s perfect.

If either you or a friend/family member are experiencing frustration, take a few deep breaths and try to share why there’s frustration. Talking about and understanding the cause of frustration is a great step towards diffusing it.

A brain injury is life-altering, and it is normal for both you and your friends/family to experience grief surrounding the changes in your abilities and your identity. Not everyone will experience all the common stages of grief, and they may not experience them in order.

A family member or a friend will most likely feel a lot of guilt connected to your brain injury. It’s a stressful and sometimes confusing emotion that goes hand in hand with frustration and helplessness. They may feel guilt that they get frustrated with you, that they feel they don’t spend enough time with you, even that the injury happened to you and not them. Grappling with guilt is complicated, and it may benefit all of you to speak with a professional therapist.
Family and friends often want to help, but don’t know how. This leads to them feeling helpless. Those feelings of helplessness can become hopelessness quickly. After a brain injury, chances are you will need some help – so let your friends and family members know what you need. Not only will you be supported, but you’ll show friends and family how best to support you.
As you move through recovery, it’s important to focus on the positives. Your friends and family members will feel hopeful when they see your progress. While celebrating progress is fantastic and well-deserved, it’s important that you all understand that things may not go back to the way they were before the injury. Instead of comparing the then and now, focus on how you’re doing in the moment.
Role reversal & changes in responsibilities
After a brain injury, your partner, children, or other family members may have to take on more responsibilities around the house and for your continuing care. This may be a huge change for both you and your family members. You will be coping with changes in your independence, and your family will most likely feel stress as you all adjust. It’s confusing for everyone, but with time and thoughtful, positive communication, you will all adjust to this new relationship dynamic.

Withdrawal of social network
After a brain injury, you may notice that friends or distant family you saw often at the beginning of your recovery don’t visit as much as time goes on. Some may disappear entirely. This can be due to the changes in your relationship with them, coping challenges, lack of understanding of brain injury, and even stigma. Sometimes people stay away because they don’t know what to say or how they “should” interact with you, even though they would like to connect with you. While this is hard to face, it’s important to be patient with your social network and communicate how you are feeling to them. Talk to them about the changes in your relationship and what you need from them. In turn, listen to what they need and be patient: they’re also coping with changes.

You may also avoid people you know because you are tired of answering the “how are you?” question. Or you may put off seeing people until you are “better.” Or you may not feel like being around others, even if you can recognize that time with family and friends may be good for you. Losing interest in socializing may be a sign of depression.