The Long Road Part III: A Family Battle

Alto Neuroscience
July 12, 2022
Long Road

The Long Road is a three-part series that covers different perspectives on the human toll of today’s trial-and-error approach to mental health diagnosis and treatment. Names have been changed to protect anonymity and images are not actual depictions.

It was a matter of life and death. 

In 8th grade, Annie started to show signs of a serious psychiatric disorder. “It was 6 months before it clicked for my family that my sister is different, different in a way that is really not healthy – in fact, in a way that threatened her own life,” Sarah said. 

Annie needed urgent care, but her path to treatment was a long and arduous one riddled with obstacles. “What people don’t realize is that those suffering from mental illnesses like my sister don’t just go into the hospital one time and instantly get better. There are many levels of care and a constant risk of them giving up at different points.”

Sarah, who is six years older than Annie, recalls the first challenge being not being able to recognize the signs of mental illness fast enough, and not knowing what to do once the problem became clear. “My mom is a nurse. The fact that she didn’t know where to turn is indicative of the broken health care system and lack of options and access in general,” Sarah said.

Once Sarah and Annie’s mom discovered the right avenue for care, the next hurdle was overcoming stigma associated with serious mental illness. While mental health is a more accepted conversation today, it remains especially delicate when the patient is a teenager, in the spotlight of their peers.

What made the situation even more challenging was Annie’s reluctance to get help. “With mental health disorders, the person needs to participate in their own care.” Sarah said. “She was consumed by her illness and therefore resisted treatment.”

On her better days, when Annie was willing to receive care, the wait times to see a reputable psychiatrist and receive access to the right facilities were incredibly long, making treatment inconsistent and unreliable.

“In central Massachusetts there were no psychiatric beds available. My mom was calling all different providers to get a bed, but it didn’t happen. The best places were always full.”

Once Annie finally found her way to a healthcare professional, they were not only having trouble finding the right medication, but also the dosing. “There was significant trial and error,” said Sarah. “My sister cycled from one SSRI to another for many months until one finally worked.”

A Family Battle

For Sarah’s entire family and mom in particular, it was devastating.

“The level of stress and worry for my mom was enormous. There was no guarantee anything would work and she had to make all of these decisions not knowing if they were the right ones. Even as a nurse, that level of stress and pressure was so hard to watch.”

Sarah described the experience of watching her mom suffer as extremely difficult. “I can imagine it’s hard to take care of yourself when every waking moment is focused on your daughter getting better.”

It also created complicated family dynamics. With her parents so focused on Annie, Sarah and her other sister felt like they were less of a priority. “If this were a fixed period of time it would have probably been ok, but the situation understandably dragged on and created a lot of pain. I didn’t want to stress my mom out when I needed help, but I was a kid, too. It had an impact on all of our family relationships.”

“I felt guilty for wanting attention when I knew I didn’t need it as much. That part was very hard to navigate.”

Lighting the Way for Other Families

Annie has been on the right medication and doing well for the past three years. Her mom has turned her experience into a platform for helping others tactically and emotionally find the path to care for loved ones with mental health disorders. “People will call her and say ‘I heard about your experience with your daughter and I was hoping to connect with you, as I’m going through something similar,’” Sarah said.

Sarah’s biggest advice for family members or friends supporting loved ones with mental illness is preparing for a long process: “There are many levels of treatment. They may cycle through many medications. This is going to be a long haul, but with persistence and the right information, you can – and will – get through it.”

Alto Neuroscience
July 12, 2022
Long Road
Notes
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