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The Emotional Impact of Brain Disease Diagnosis

Few diagnoses carry the weight and fear that come with an incurable brain disease. It’s a moment that shatters lives and sets off a whirlwind of questions, fears, and uncertainty. The emotional impact extends far beyond the individual receiving the diagnosis, affecting family members, friends, and caregivers. An estimated 48 million individuals currently care for adult family members or friends, navigating the uncertainty, shock, and hopelessness alongside them.

In this blog we go beyond the considerable physical and financial costs of brain disease to understand the emotional toll that brain disease has on individuals and their loved ones. We hope these stories from our community members highlight the reality of life with brain disease and demonstrate patients’ and caregivers’ incredible strength in the face of adversity.

Navigating Isolation After A Diagnosis

Julie Turner was 54 when she learned she had cerebral small vessel disease (CSVD). CSVD can lead to a variety of symptoms in later stages, including cognitive impairment, and issues with walking and balance. Eventually, Julie’s condition worsened and she was forced to quit her job, ending a 40-year career she loved. To add to her isolation, she noticed that the challenges CSVD created were pushing some loved ones away. This isolation resulted in more difficulties navigating daily life and care, and also worsening depression. Julie’s experience is unfortunately all too common for people experiencing chronic illness, highlighting the importance of caregivers and support groups. 

Relearning Basic Skills to Reclaim Her Identity

Genevieve Bahrenburg experienced two TBIs that changed life as she had known it. Not only did she undergo a total of 13 brain and skull surgeries over the years to compensate for the skull damage, but she also suffered aphasia and had to relearn how to walk, speak, and read. For Genevieve, parts of her identity once taken for granted became monumental challenges. For instance, the art lover and Vogue and Elle editor suddenly had to teach herself to read again. Genevieve would visit museums and libraries to relearn the names and works of her favorite artists. Reclaiming that part of her identity was just one step on a long recovery journey. Genevieve tells her story to shine a light on the recovery process. 

Finding A Purpose Through Powerlessness

Living with a brain disease that doesn’t have a treatment or cure can plunge patients into a cycle of hopelessness. Ruth Hochheiser’s ongoing journey with orthostatic tremor (OT), a rare movement disorder, shows the emotional toll of living with a progressive disease with no cure. When it comes to accepting the new limitations and challenges that come with not being able to stand, some days are better than others. “It creates a feeling of isolation, a feeling of powerlessness, a feeling that I have no control,” Ruth says. To help regain a sense of control, she meditates daily and works with health care organizations and researchers to advocate for OT.

The Emotional Toll of Brain Diseases on Caregivers

Brain diseases not only affect the individual diagnosed but also create a ripple effect of emotional strain for their families and caregivers.

Mary Jo M. still remembers where she was when she learned that her mom was diagnosed with dementia and Alzheimer’s. Her father had just been diagnosed with diabetic neuropathy and was working through the complications of a stroke and traumatic brain injury. 

“I had a choice at that point to either stay in New York and continue to work… or to come back to Chicago and be with my family,” Mary Jo says.

She remembers being unsure what to do, stressed beyond belief, and afraid of the future. Like many loved ones, she had more questions than answers: Who’s going to be the power of attorney? Are they allowed to make decisions anymore for themselves? Who’s going to make sure that my mom doesn’t walk out of the house in the middle of the night? Who’s going to make sure that my dad doesn’t fall?

She took six months off work to consider her options, but ultimately moved home and became her parents’ caregiver, coordinating closely with a personal family caregiving team and multiple therapists.

Mary Jo’s life is nothing like before, but the most devastating thing is losing her mother’s friendship and watching her unable to do the things she once loved. “It hurts when I have friends who have so many great things that they do with their mothers… and I can’t,” she says, “I’m just trying to keep her alive.”

Too many people know firsthand the emotional burden of brain disease, whether it’s watching a loved one slowly slip away or progressively losing the ability to do things that you once did with ease. The American Brain Foundation envisions a world without brain disease and is committed to funding innovative research to get us there. 

The American Brain Foundation is committed to finding cures for brain diseases. Donate today to make a difference. With your help, we won’t have to imagine a world without brain disease, we’ll be able to live in one.