How to Talk to Family and Friends About Your TBI Recovery: Navigating the Invisible Illness

Feb 65 min read

This blog post offers guidance on how to communicate with family and friends about the challenges of healing from a traumatic brain injury (TBI), especially when symptoms are invisible. It emphasizes the importance of self-advocacy, setting boundaries, and using specific language to help others understand the reality of TBI recovery. The post also offers personal insights and encouragement for others facing a similar journey.

One of the hardest parts of healing from a traumatic brain injury (TBI)—especially when the injury is invisible—is finding a way to communicate your experience to family and friends. If you're anything like me, you may have been labeled with generic terms like "headache girl," leaving others unaware of the true complexities of what you're going through. TBI symptoms, while real, are often hard for others to see, making it challenging to get the support you need from those closest to you. In this post, I’ll share some advice on how to explain your injury, set expectations, and ask for the support you need to continue healing.

In the car with my dog, River, wearing sunglasses to shield my eyes from the harsh sunlight. While everything else seems normal, the sunglasses are a small but necessary adjustment due to the sensitivity I experience from my TBI. The invisible nature of the injury means that even on days that look “normal” on the outside, there are precautions I need to take to protect my healing brain.

The Invisible Nature of TBI

TBI is often called an "invisible illness" because the physical and cognitive impacts aren’t always visible to the naked eye. Unlike a broken arm or a cut that can be seen and understood by others, the symptoms of TBI—like brain fog, memory loss, dizziness, and chronic headaches—are often internal, making them hard to explain to family and friends.

I spent the first 18 months of my journey hearing things like "You look fine" or "But you don't look injured." This can leave you feeling frustrated and isolated, as if you're invalidating your own pain just to avoid disappointing others. But the truth is, the challenges are very real, even when they aren't visible.

How to Start the Conversation

Be Honest and Specific: It’s important to be clear about your symptoms. For example, instead of saying, “I don’t feel well,” try something more specific like, “I’m dealing with brain fog right now, and it’s making it hard for me to focus.” Or, “I’m experiencing light sensitivity today, so I’ll need to rest in a dark room for a bit.” The more specific you can be, the easier it will be for others to understand.
Use Analogies: Sometimes, explaining a TBI can feel like explaining a complex puzzle. One thing that helped me communicate my struggles was using analogies. For example, when I couldn’t find the right word in a conversation, I would say, "It feels like I'm trying to find my way through a maze in the dark. My brain is trying to figure it out, but it’s taking a lot longer than I want it to." This helps others understand the mental effort involved in something that may seem easy to them.
Break It Down: Not everyone will understand the complexity of TBI right away. You may need to explain it step by step. When I was first diagnosed, I had to walk through the various therapies I was undergoing: neuro-PT, cognitive therapy, vision therapy, and speech therapy. Explaining each aspect of my recovery helped those around me realize that it’s not just about feeling "better"—it’s a process with many facets.
Use "Brain Injury Moments": When I’m having a struggle, I’ve learned to acknowledge it in the moment. I’ll say something like, “I’m having a brain injury moment right now,” when I struggle to express myself. It’s a simple way to let people know that the struggle is part of the injury, not a personal failing or just a "bad day."
Set Boundaries: Sometimes, people who care about us try to help by suggesting what we should do or how we should heal, often without understanding the full scope of the injury. It’s important to set boundaries and explain that, even though you may look "fine" on the outside, your brain needs specific types of care. If you need quiet, rest, or to avoid certain environments, don’t hesitate to communicate that clearly.

Self-Advocacy: You're the Expert on Your Injury

The most important thing I’ve learned is to advocate for myself—no one knows my brain and my body as well as I do. I had to fight for a diagnosis after 18 months of being told I just had headaches, and I continue to push for the treatments and therapies that best support my healing. Remember, even though your injury is invisible, it is valid.

Self-advocacy involves seeking out the right specialists who understand TBIs and pushing for the care you need, whether that’s through neuro-optometry, speech therapy, or cognitive therapy. It's also about listening to your body and knowing when to ask for rest or when to ask for help.

Support for the Long Haul

Healing from TBI is a long process with ups and downs. There are days when you’ll feel hopeful and optimistic, and days when you’ll feel defeated. That pendulum of emotions—anger at the injury, frustration with the slow progress, and hope when you see even a small improvement—is all part of the journey. I’ve learned that it's okay to feel angry or frustrated. Don’t bury your emotions, and don’t let others minimize what you’re going through because they can’t see it.

If there’s one thing I wish I could tell anyone navigating a TBI, it’s this: You are not alone. While each journey is unique, there is a community of people who understand your struggle. Sharing your experience—whether through a blog, social media, or simply reaching out to others who have had similar experiences—can help you feel supported. You don’t have to fight this battle alone.

Healing Takes Time, and So Does Understanding

It’s hard to explain a brain injury to those who can’t see it. But with patience, specificity, and self-advocacy, you can help your family and friends understand what you’re going through. Healing from TBI is a long and often invisible process, but that doesn’t make it any less valid. Keep advocating for yourself, and remember: you're not alone in this journey.

For more on my recovery and the ups and downs I’ve faced, check out my three-month update. Keep pushing forward, celebrate the small wins, and take it one day at a time.

Key Takeaways: