Living with a Brain Injury: Survivors’ Perspective

What survivors want you to know about living with a brain injury

Until you have been injured yourself, or have cared for an injured loved one, you might not fully understand the impact a brain injury can have on a person’s life. Survivors living with a brain injury want to bust some common myths around their condition:

Myth #1: I look fine, so I must be healed

Traumatic brain injuries (TBIs) can leave lasting effects on a patient. While many brain injury survivors regain many functions after a few months of rehabilitation, recovery can often take years. Some effects remain with a person for life.  

Not always readily visible to others, symptoms can include:

• Memory problems and confusion
• Trouble communicating
• Difficulty with basic tasks
• Sleep issues
• Balance and coordination difficulty
• Fatigue
• Impacts on mood and temper
• Depression and anxiety
• Sensitivity to light, noise and other sensory input
• Weakness or numbness in fingers and toes

People living with TBI report needing friends and family to treat them with patience as they navigate their new normal. Daily activities might take longer than usual, and they might need extra support along the way.

Don’t assume your loved one is 100 percent recovered just by looking at her. Ask how she’s doing and if she needs to take a break from an activity.

Myth #2: I am lazy or unmotivated

Brain injury can require a person to relearn even basic tasks, and patients often need extra time to absorb and process information. If your loved one seems to move slowly on a task, do your best to give him space as his brain works through the challenge. Each repetition of the task will help his brain develop new neural connections and/or heal to some extent from the injury.

To learn more about the mechanisms involved in brain injury recovery, talk to your loved one’s neurologist, physical therapists and others involved in his care. They can help you understand how his brain is working post-injury and how it’s recovering from the trauma.

Myth #3: I need help in the same way a small child needs help

Adult brain injury survivors report a lot of frustration around people talking down to them, finishing their sentences or assuming a low level of mental function. Although many patients have slow, labored speech following a brain injury, allowing them to complete a sentence or a thought actually aids in their recovery.

Try to resist the urge to do everything, including speaking, for your loved one. Ask if she wants help, and respect her wishes if she says no. Doing things for herself can serve as a powerful component in her recovery.

Myth #4: I am antisocial

Many people with brain injuries tire easily, and they also report higher sensitivity to noise, light and crowds. They can also have issues with communication and a reduced awareness of social norms. These symptoms can become overwhelming and cause the individual to avoid parties, loud restaurants or other social situations.

That said, brain injury patients still need social time with their friends and family. Strong social bonds can decrease depression and can help the patient better reintegrate into society. Help your loved one create positive social interactions in small groups and quieter settings during their recovery.

Myth #5: I have weird habits

Brain injury patients sometimes repeat behaviors or tasks. Sometimes they talk through a task out loud. They walk or drive the same route every time. To outsiders, these habits can seem odd or rigid. However, repetition and verbalization can help the person’s brain relearn the information needed to complete each task.

To support your loved one, coach him through the task, but leave room for him to do it himself — his way. What your uninjured brain sees as second nature, your loved one’s brain needs time to practice and learn.

Final Thoughts

Brain injury survivors need a lot of patience, love and support as they recover. As a caregiver, approaching your loved one with compassion and understanding can go a long way.

That said, you might also experience a roller-coaster of emotions as you try to help your loved one. The person you love might have changed a lot due to his or her injury, and that can leave caregivers confused and angry. As you learn to support your loved one, also be sure to pay attention to your own self-care needs.

Read more about these myths and others in the Brainline article, “What Brain Injury Survivors Want You to Know.” The article features a compilation of stories from real brain injury patients. If you are living with or caring for a loved one with a brain injury in Colorado, visit the Brain Injury Alliance of Colorado for more resources, support groups and more.

If you or a loved one have been injured in an accident, contact us for a free case evaluation.