Finding Support When Your Concussion Symptoms Persist

By Lauren Moore, Marketing and Communications Manager, BIAA

Concussions can have a wide range of symptoms, including headaches, nausea, sensitivity to light or noise, dizziness, exhaustion, difficulty concentrating, and more. For some, those symptoms can last weeks, months, or even years after the initial injury. In addition to the physical toll these symptoms can take on a person, they can often lead to feelings of isolation and despair, making it important for sufferers to get the support they need as they navigate their post-concussion lives.

Allison Moir-Smith, a therapist, artist, public speaker, and concussion survivor and activist, presented “Finding Support When Your Concussion Symptoms Persist,” a free webinar offered by the Brain Injury Association of America.

An Accident Leads to a Concussion

Allison’s concussion story starts like so many others — with an accident. During a ski trip with her family, she slipped and hit her head. Unaware that she had just gotten a concussion, she stood up and joined her family further down the slope. She continued to take another run, then took the two-and-a-half-hour drive home.

Because she wasn’t exhibiting the most severe symptoms of a concussion (like being knocked unconscious or vomiting), she didn’t think she needed to be seen by a medical professional. Just as so many other concussion survivors – especially busy working moms like herself – have done following their injury, Allison went on with her day-to-day life. But the following week, she started to feel unwell – something that is especially common in women, whose symptoms tend to bloom slowly. “I started to get light and noise sensitivity, headaches, nausea, balance problems. I couldn’t read or write. I felt like I had fire in my veins, and I didn’t understand what was happening to me,” she recalled.

Weeks went by, and Allison lived on in darkness – literally. “I was wearing a hat and sunglasses inside the house because of my light and noise sensitivity,” she said. Allison kept calling her doctor, who advised rest and assured her the concussion would heal on its own. “I trusted her because I had to. Because I had a brain injury, and I didn’t know what was happening.”

Allison detailed the exhausting months that followed. “I was functioning, but I always longed to be on the couch, with my hat and sunglasses, under my son’s Star Wars blanket,” where it was dark, quiet, and safe, she said.

That isolation took a huge toll. Under that blanket, she would ruminate, wondering why she wasn’t feeling better. She wondered if she had a tumor, or early onset Alzheimer’s. She was scared and depressed – and that depression grew into suicidal ideation.

Allison found herself withdrawing from her normal activities, including her exercise group and her church, where the singing and organ music were more than she could bear. She was even limited in how much she could support her children at their sporting and theater events. “I lost all of my normal supports. I lost joy, friendship, my identity of being a person out and about in the world,” she recalled. As she watched her friends carry on with their lives, she felt forgotten, hurt, angry, abandoned, and deeply lonely. Although being around other people was too stimulating and draining, the loneliness was overwhelming, creating an impossible situation. “Loneliness is serious stuff, with enormous physical and mental health consequences,” Allison acknowledged.

Finding Relief, Support, and Community

Over time, Allison began to experience “small healings” – relying on her hat and sunglasses less, being able to sort her family’s laundry, getting through the holidays. The bitterness she had felt for months started to wane. She also found support in “unexpected angels,” the women who belonged to her church that sent cards, left cookies on her front porch, and checked in with her.

“Who is showing up in your life right now? Who checks in with you? Who helps you? Who takes the time, who remembers you, who reached out to you even when you can’t do your part in the relationship?” Allison asked. “I hope you can appreciate them, because they’re probably not who you expect. Start embracing the people who are actually showing up in your life.”

She also found relief in a supportive speech language pathologist, who validated her symptoms and worked with her to develop strategies that would help mitigate some of her symptoms. She also taught Allison how to calm her nervous system, which in Allison’s case included spending time using a coloring book. Those daily coloring sessions grew into a love for watercolors, and provided a tangible example of how far she had come in her recovery.

Allison’s daily art practice led her to Instagram, where she shared the progress she had made in her art in an effort to inspire hope in other concussion survivors who were struggling. “Instagram has been a game changer in my concussion recovery,” Allison said, explaining that what she found there was “an amazing community of people who have knowledge and who will help.” She made friends, found work, sold art, and ultimately became a concussion activist thanks to the support she found within the Instagram concussion community. “There’s a wonderful world of concussion recovery just waiting for you to join us,” she said.

However, she acknowledged, connecting with strangers, even online, can be intimidating. She shared tips for getting set up on Instagram, finding the concussion recovery community, and ultimately forging connections with survivors, activists, and others who can offer help and support during what is often a scary, painful, lonely experience. Allison offered suggestions for hash tags and concussion-related accounts to follow to get started, as well as tips for offering support to others who are struggling. “What you put out there will come back to you,” she added.