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.