What Does Self-Care Look Like When You’ve Got a Brain Injury?

Eugene Mymrin/Getty Images

Annie Liontas was 35 when they fell off their bike and hit their head. That day they were diagnosed with a mild traumatic brain injury (mTBI), commonly known as a concussion. Over the next year they experienced two more: one when a car seat fell off a shelf and onto their head in a department store; the other in a gardening accident. Liontas details their years-long recovery process and explores what it means and looks like to be someone chronically injured in Sex with a Brain Injury, our SELF Well-Read Book Club January pick.

Here, we chat with Liontas about the relationship between illness and trauma, the little-discussed (and sometimes strange) physical effects of a brain injury (more specifically, why “Mambo Number Five” gets stuck on a loop in their head), and their advice for couples who find themselves in similar circumstances.

SELF: One of the clear themes of the book is the intersection between physical pain and symptoms of anxiety, trauma, and depression—how they can become so intertwined that they seem indistinguishable. How do you grapple with that, or make sense of all of your symptoms?

Annie Liontas: It took me a long time to trust myself. I don’t think I’m alone in that. But when you live with a condition for many years, you begin to differentiate between the effects of something like yet another subconcussive hit versus the experience of generalized anxiety. It’s still a challenge—for example, any form of stress can trigger a migraine—and an ongoing vulnerability that I never imagined for myself. It means I not only have to be vigilant, but patient with myself.

So many people hear things like “It’s all in your head” from their doctors or even their loved ones. There’s truth to this, of course—the only places we have to live are in our bodies and our brains—but what these people often mean is that what we’re experiencing is “merely” anxiety, or “merely” depression. They believe, with the best intentions, that if we simply think about our pain differently, we’ll get better. The challenge with an invisible disability is that it perpetuates doubt—it can’t be seen and therefore can’t be perceived. When it comes to mild traumatic brain injuries specifically, this is true not only in our interpersonal relationships but in larger society, because we don’t yet have the cultural framework to recognize the long-term impact of them.

What do you think is the most common—or even harmful—misconception about TBIs?

Most people do not actually recognize that concussion means brain injury. Generally speaking, we only believe in severe traumatic brain injuries. We think if someone didn’t pass out when they hit their head or wrap their car around a pole, they must be okay. We do not yet, as a culture, recognize that even mild traumatic brain injury—concussion—has lasting effects, both physical and mental. People dealing with mTBI struggle with emotional regulation, anger, and anxiety. People with post-concussive syndrome can be at a higher risk for suicide, as we tragically saw with Olympian Kelly Catlin.

Another thing people don’t realize: Every facet of a person’s life is affected by head trauma. We think it’s just memory, or just physical, but the truth is that our relationship to work, emotions, exercise, friendship, family, fun—it all changes. I titled this book Sex with a Brain Injury because we rarely think of how sex is impacted by a chronic condition like TBI. I remember being in a TBI support meeting and bringing up intimacy, and seeing all of these people around me nod. I realized they were all going through the same thing, but nobody was acknowledging it, maybe not even with their own partners.

You describe “Mambo Number Five” frequently getting stuck on repeat in your head after your brain jury, and that it’s usually a sign of a larger pain episode to come. Can you describe those moments? What is that experience like?

Today it was Destiny’s Child, “Bills, Bills, Bills”—which I don’t think I’ve heard in years. I was like, “Why can’t it be ‘Dangerously in Love’?” Usually it hits right when I open my eyes and stays on loop for hours or days. The songs tend to have a repetitive quality. My friends know they aren’t allowed to play Gloria Estefan around me. When the songs go on like this, I know that I need to get rest, or slow down, or drink ginger tea, or get craniosacral therapy, or take diclofenac—all the things I do to take care of myself. I used to see these songs as a nuisance, but now I recognize them as helpers. (Well, except for “Mambo Number Five.”)

What is your advice for anyone who gets nervous about or is reluctant to ask for accommodations, use doctor’s notes, and the like?

This is such an amazing question! I think most of us—especially women—are taught not to take up space or to ask for what we need. We are taught to pity disability and chronic illness, even to be suspicious of people who require accommodation, especially when their condition is invisible.

When I get nervous disclosing my TBI—because I still do!—whether it’s to a doctor or an employer or new friend—I try to remember that the doubt surrounding TBI arises not just from individuals, but whole systems and inherited histories. Taking care of ourselves requires radical care. Caring for ourselves means we can care for others. And I try to remember there are a lot of us out here: a vibrant, growing community of TBI survivors. You are not alone, even when you feel most alone.

What advice would you give to couples who are living through a similar experience—where one partner becomes ill and the other becomes a caretaker? What, ultimately, helped you and your wife stay together?

This book is dedicated to the Walking Wounded—people living with “minor” or invisible illnesses and injuries who may, on the outside, seem to be participating in normal life—but it’s also dedicated to my wife. I’m so sympathetic to couples going through injury and chronic illness, because a condition like TBI does not just affect the person who got hurt, it affects everyone closest to them. It’s hard to watch someone you love struggle and be helpless to do anything. It stirs all kinds of emotions—anger, helplessness, doubt, denial. Recently at a reading, a father and daughter approached me. The daughter had had three concussions and was suffering—and the father looked absolutely devastated. He did not know how to help. What I said to him was, you’re here. That’s what matters. You are showing up. Keep showing up, every day, and listen to what she is going through, and know that she wants to get better too, that she is doing the best she can. You both are.

Many of us who have been married a long time know that there is no secret to marriage. Love is a verb, and it demands daily action. How can you meet one another, even now? How might you comfort each other not knowing when this will end, or if it ever will? How can you laugh together? What new shape can you take together, even as you grieve the loss? What joy can you find in life, individually and as a partnership?

This interview has been edited and condensed for length and clarity.

‘Sex with a Brain Injury: On Concussion and Recovery’ by Annie Liontas

$28.00, Bookshop


Originally Appeared on SELF