9 Strategies for Navigating Life With a Traumatic Brain Injury
A few years ago, I found myself in the same situation many traumatic brain injury (TBI) survivors have faced — trying to establish a “new normal” and re-enter the workforce while navigating the murky purgatory of brain trauma recovery.
As part of my research about applying to jobs as a person with a disability, I sat down with a woman who works as a consultant for people on the job hunt. I shared with her what I had yet to tell anyone in the context of a conversation about my career. I had endured a massive loss of cognitive function due to my TBI, and even though I had made huge strides in my recovery, I still at times had difficulties with my memory, fatigue, migraines and stamina. I was worried that no one would want to hire me if they knew I had some temporary medical challenges, so I asked her advice about how to address that topic during an interview.
“As someone who’s been in a hiring manager position before, I’m going to tell you straight up. If you came in to do an interview with me and told me that you had suffered from brain damage, I would immediately start worrying that one day you might go ‘crazy’ in the office and hurt people. I’d never hire you if I knew. So it’s best to keep that injury to yourself.”
I couldn’t come up with a more devastatingly callous and ignorant response if I tried.
That experience proves a point. It’s hard to find reliable advice and support for people as they recover from a traumatic brain injury. Making the transition from being a full-time patient to returning to work, to a social life, and to your most intimate relationships can be a wildly difficult thing to do. I wish I had had someone to talk to about how to handle the challenges that come with TBI recovery, from the daily disappointments and frustrations (like not remembering how to turn on your coffee maker) to the bigger questions, like “how will I support myself from now on if I can’t work?”
Here are some things I would have found helpful to hear after my injury, from the very first days and weeks seeking acute care through the years I spent in active recovery.
1. Pay a social worker to help organize your legal case if you have one, coordinate medical care or attend doctor appointments with you, and apply for disability coverage under Social Security.
These kinds of things are very often unmanageable after a TBI; the paperwork those jobs require would be frustrating for a person without a brain injury! Paying a professional who knows how to expedite the process, ask the right questions to the other professionals helping you, and even coordinating care with your family can make all the difference in your pursuit of recovery. Disability coverage applications are notoriously tough — most people get denied coverage their first time applying, so having someone who does this kind of thing for a living can take a lot of mental pressure off and ensure you have the best chance possible at getting the support, care and financial compensation you need.
2. Find your local Brain Injury Association (BIA) of America chapter and check out a meeting if you’re able.
It can be a bit scary to join a new group, especially when you’re experiencing acute TBI symptoms, but it can also be a great place to find community, support, and people who understand what you’re going through. The first meeting I went to, I went home with a long list of notes I had made from suggestions and resources that other members had made for me. BIA also connected me to professionals who are trained to know when someone needs help and isn’t getting it (which unfortunately happens all too frequently), and they can provide guidance about resources in your community should you need long-term care. Don’t try to tough it out or figure it out all by yourself — go to the people who know what they’re doing!
3. Read up on your brain and neuroplasticity.
Brains are absolutely astounding, and bodies have a much higher capacity for healing and recovery than I had ever known before my accident. If you are feeling some despair that you will always feel the way you do right now-I totally understand that. Reading stories of people who have recovered, and understanding how and why they did, can give you a lift. My favorites are both by Norman Doidge: “The Brain That Changes Itself” and “The Brain’s Way of Healing.”
4. Get mental health support.
Most TBI patients experience mental health challenges as a direct result of their brain trauma. Even if you’ve never been depressed a day in your life, if you’ve had a TBI, odds are that mental health issues will be a part of your symptoms. Depression, anxiety, insomnia, chronic pain, and PTSD can make it much harder to cope while you recover, so please please, even if it’s all you can manage for the day, call a therapist, tell them you’ve had a TBI, and see if they have experience treating brain trauma patients. I found EMDR to be incredibly helpful for processing traumatic memories, and more recently I discovered NET, a modality that has resolved a lot of the chronic pain and anxiety issues I’ve had since my TBI. Creating a system of providers, including a therapist, that you trust and can rely on can help get your recovery off on the right foot.
5. Put your monthly subscriptions, utilities and bills on autopay.
Given the severity of my TBI, I didn’t pay any bills for six months. They’d come in the mail and I’d put them on my kitchen table and literally not be able to figure out how to open the envelope and read the bill (I also lost the ability to understand the concept of money, which didn’t help things). And right now, you don’t need that stress! Get some help if you need to, compile a list of all the bills you pay and put it in a document that you share with a friend or family member so you’re not the only one with an eye on your finances. Then set up autopay to prevent late fees and keep life rolling as smoothly as possible.
6. Re-evaluate what a successful career could look like for you.
This can be one of the harder elements of having a TBI — saying goodbye, even for a while, to a job you loved. Or, having to quit work for an extended amount of time (which is what happened to me), and having to figure out if you’re able to work at all as you recover. Some people find they can return to work in a month or two — that was not the case for me. I didn’t work for a year and a half, and my first job back was working at a restaurant so I could practice multitasking and, frankly, surviving in a stressful environment again to give myself more hours of cognitive rehabilitation.
I have since moved on from the restaurant, but I have not returned to the normal “9 to 5” job because so many of those environments are not conducive to managing a chronic health issue or disability. The typical work environment wasn’t right for me because of the symptoms I’ve continued to have, and it may not be for you either — that’s OK. I picked up contract work instead, which has let me set my own schedule, take naps mid-day when I need to, and go to medical appointments. I’d encourage you that, when it’s time to consider work again, think outside the box, or recruit a friend to help you get creative about other options you could create for yourself. The situation can be frustrating and scary, and making yourself open to some other work options can help with managing those feelings and finding a practical option that provides the flexibility you need to take care of yourself.
7. Talk to your family about finances and other pressing concerns sooner than later.
Medical care for TBIs is mostly delivered via specialists, and that’s expensive. If you’re not able to have a job for a while, that puts most TBI patients in a really tricky spot. Having an honest conversation about what your financial situation is, and what you might need three months, six months, or even a year down the road, can help protect you from hemorrhaging money or facing bankruptcy. If you think you’ll eventually need financial support, speak up at the beginning about your concerns. It’s easier to make a lifestyle adjustment when it’s by choice rather than when its under duress. Do you need to consider moving in with a family member? Are you a single parent with a child that needs another set of eyes on them for a while? Did you sign up to coach that soccer team and need someone else to take over? Say it. I wish I had done that sooner-sometimes your friends and family can’t know what your situation really is unless you bring it up.
8. If your doctor sucks, fire them.
I saw three neurologists before landing on the doctor who helped me start making actual progress. One neurologist looked at my brain scan (the one with, you know, a brain bleed), and shrugged, said it would go away eventually, and signed a prescription for Zoloft without asking me about any of my mental health history. Another told me she’d be happy to sign the necessary forms to let me be on disability coverage the rest of my life without offering any advice about what I could do to get better. Um, no and no.
It’s a terrible irony that at the time you need a great doctor most, after a TBI, is when patients are vulnerable to lazy doctors yet are least capable of advocating for themselves if they get paired with a subpar provider. Do not be scared of saying “this doctor isn’t right for me” and leaving. This is your health, your brain, your time. If your doctor doesn’t blow you away with their excellence and compassion, dump ‘em. At whatever turn you are able to, advocate for yourself as you seek medical care. And if you don’t have the health to do it for yourself, that’s where a family member or a social worker can be your best ally.
9. Invest in a few small things that bring you joy.
I like plants, and my house is now full of them because I started collecting them after my accident. It’s a simple thing that connects me to nature and reminds me that there is beauty in the world. It may sound simplistic, but fight the urge to sit in the darkness. Arm yourself with practical things that give you relief from the difficulties you’re facing. There are beautiful things in the world — surround yourself with them as a reminder that one day you’ll be back at it again.
If you’re currently going through a brain injury, know that even through the isolation and worry about the future, there are people who can and want to help. Brains are capable of astonishing healing, and there are wonderful people who can help you get things settled while you focus on recovery. There is light, and life, on the other side.