You look great! How to support someone with a mild traumatic brain injury
In February 2015, I accidentally smacked my head on a wall. I didn’t lose consciousness, but I immediately knew something was very wrong. I couldn’t focus on what people were saying, couldn’t balance on one foot which I usually could do no problem, and I had an incredible, relentless stabbing pain in my head. Emergency room and primary care doctors didn’t find much to be worried about using traditional diagnostic tools, so I was sent home with a diagnosis of mild concussion and told I’d be able to return to work soon.
This did not happen. My symptoms did not improve and worsened when I tried to return to work a week later. I instinctively understood that if something I did made my pain worse, I needed to stop doing that. That meant quitting my job and taking on a much slower pace of life. I temporarily gave up my dream of going to law school that fall because I still couldn’t read fast enough to keep up, or without pain. For an intellectual, a reader, and an achiever, dealing with post concussion syndrome and learning how to use my brain again at a very basic level has been humbling and frustrating.
It only takes one brain injury to turn someone into an advocate for and supporter of other brain injury survivors. This horrifying sorority involves recovery and rehabilitation in multiple areas: speech, vision, balance and coordination, organization, attention, focus, memory, reading comprehension, mental and physical stamina, emotional regulation, pain management, sleep, light and hearing sensitivities, new allergies, and more. It can involve multiple diagnoses and an endless pursuit of the right practitioners who balance knowledge with belief in their patients. The impact of even a so-called “mild” traumatic brain injury (mTBI) on life can be severe and last for years.
I have spent the past two and a half years since my injury seeking treatment from a variety of practitioners. In the last 7 months I have seen huge improvements since going to Amen Clinics, where scans confirmed what I already knew.* My brain was indeed injured. Online forums like Hope Unfading provide resources and support for survivors trying to navigate this complex injury world. Brain injury is often an invisible disability. Many survivors appear fine, normal, like themselves, but their internal daily experience is much different than it used to be.
Emotional support is a critical factor in healing, and in healing brain injury in particular. It is more crucial now than ever to learn how to respond compassionately to one of the hundreds of thousands of newly injured each year, plus the millions currently living with brain injury.
So how do you help someone with an mTBI ? What do you say and what do you do? Whether you are a friend, a sibling, a parent, a coworker, or an acquaintance, here are a few suggestions.
- First, know that no two brain injuries are alike, and sufferers from mTBI can recover in a few weeks, months, a year, or beyond. The majority of mTBI patients recover in less than a year, but a small percentage take much longer. Be willing to continue actively supporting someone long after the point at which you think they ought to be better. Brain repair can take a long time depending on how severe the injury was and whether there were any previous problems with brain function.
- Knowing this can help you be patient as someone heals, but recognize the need for medical and therapeutic interventions. Brain injury is a medical problem and people with brain injuries need to be seen by a doctor. Their symptoms are not all in their head. They are coming from real neurological and chemical changes to the way the brain operates. Make sure as long as someone is having problems that they have the best medical help possible. It might take some searching to assemble the right team of practitioners. Keep searching.
- Listen and practice empathy. Having a brain injury is an extremely confusing experience. Not only is your experience of the world different, but you have to rebuild the mental, emotional, and physical resources you used to rely on. Try to imagine what it would be like to be in their shoes, even if you’ve had a much worse injury or if you’ve had no experience with that kind of injury whatsoever.
- Never “at least” someone. It’s easy to say to someone with a head injury, “Well, at least ____ didn’t happen. At least you can still do ____ after your injury.” You would never say to a runner with an Achilles tear, “At least you can still walk!” You’d mourn with her that she can’t perform at her usual level any more. People with brain injuries are in a similar predicament, except that it could be their whole life that has been temporarily or permanently changed. Before you “at least” someone, remember you don’t know the whole story, or their ongoing health concerns that the injury precipitated. Not being able to use your brain’s full capacities and developing chronic health problems as a result is a tragic occurrence that deserves empathy.
- Try not to solve the problem for them, but be willing to help problem solve if asked. Finding a balance between these two is tricky. People with brain injuries need emotional support and problem-solving support, but the damage caused by the injury can compromise their ability to think straight or react in emotionally appropriate ways and accept what you’re saying. They might need support relearning how to do things they used to know how to do. Be willing to work with someone in the way they express a need for help, and be willing to keep trying to figure out what that is. Think of tasks they need help with now. Can you remind them of it, sit with them as they do it, walk them through it, go with them to do it?
- Don’t try to find meaning in their situation. There is no one better to interpret an experience than the person who is having that experience. Your friend has probably thought of many possible interpretations of their experience already, and they don’t need you to say, “Oh, well, this is probably why this happened.” Just don’t. You don’t know for sure why something happened, and it’s likely they don’t either. You might be pouring salt in the wound.
- Sit and be with them. Use your simple presence to help them calm down. Use your calmer nervous system to co-regulate with their more chaotic one. Just lending a loving presence can be hugely calming. You don’t need to step in with huge words of comfort or grand gestures of fixing. You can just be there even in their suffering. This is more helpful than you would imagine.
- Learn how to offer helpful words of encouragement. Saying something like, “You look great!” can be a recipe for emotional spiraling in someone with a brain injury. All that person can think is, “Well, great, I look fine but am really suffering. How can I get help if no one understands I need it?” Try words like, “This is so hard. It’s terrible to lose all your independence as an adult.” “How stressful to not have a job right now when you have a constant stream of medical bills.” “You have said you can’t grocery shop because the store is so overwhelming. Would it help if I took you?” “Do you need someone to remind you to do your therapy exercises? Do you need me to sit with you while you do them?” “Would you like to go for a walk?”
- Ask them if you can help them at home. Just because someone looks fine does not mean they can care for themselves adequately. Ask if any household or self-care tasks are too hard for them right now and if they would like assistance in doing them. Part of mTBI recovery can involve literally learning how to do everyday tasks again. Be supportive and show someone how or take a burden off their plate, even if it’s just for one meal.
- Believe them when they say they’re too fatigued, even if they still look fine. This fatigue can be debilitating, especially in the early stages of recovery. Don’t assume someone can do everything they used to be able to do. Pay attention to what they say about their symptoms and needing to take it easy. Take their words completely seriously. Help them get out of an overstimulating situation as quickly as possible. Brain injury meltdowns are miserable, and someone can go from being energetically and emotionally fine to not fine in seconds. The brain has become so overwhelmed with stimuli it literally shuts down, which can result in crying, anger, and intense pain. Brain injury survivors learn how to respect their energy resources; try to do the same for them.
- Find out whether they need a visit & bring the fun to them. After my injury, I spent more than a year mostly in bed. I had visitors from church, but not many friends. I could have really used visits, but was too sick to ask anyone to come. I couldn’t get out of my house to socialize because it was too overstimulating. I couldn’t be in large crowds or around bright lights or loud noises. Visit people quietly in their home so they don’t feel left out of social interactions and let them know you haven’t forgotten about them.
- Finally, educate yourself. Do research about mTBIs. A brain-injured person might not be able to read or find the help that they need as easily as they would if they were fully healthy. You can be their brain, helping them make it to appointments or learning about the newest treatments, while their brain is getting put back together. At the same time, know that you can’t be someone’s only support. A brain injury affects the whole family and can devastate any relationship. Care for yourself emotionally so you don’t burn out. It takes a team of practitioners and supporters to help someone with a brain injury. Being educated will help you see what you can do and when you need to seek out trained professionals for the rest.
Brains are neuroplastic. They change under the right conditions and they have miraculous ways of healing, even if it takes a good long time. If you’re suffering or you’re supporting someone who is suffering, seek proper help from professionals. Things get better. I promise. You can do this!
*This is not a sponsored post for Amen Clinics. I have never received any money or discount or extra benefit for talking about them, and I will not be receiving any money, discount, or benefit from them now or in the future for making this post. They don’t know that I have written this. I am sharing one treatment avenue that helped me, when there are hundreds of thousands of others that might work for you.