Voices & Stories

Trigger Warning: This toolkit contains stories of people with BD who have been denied access to mental health and substance use disorder treatment facilities. Except for Derick, whose family has authorized the use of his name in conjunction with this project, the names of the community members have been changed to protect their privacy. The content of these stories may be triggering to some. The stories include discussions of mental health issues, substance use disorders, self-injurious behavior, suicide, and violence.

Read Derick & Jen’s Story - Substance Use Disorder (SUD) Denial

I met Derick when he was 14 years old. I was a couple months into my new job at the hemophilia treatment center, and Derick was just getting into what would become a cycle of substance abuse.

Read Leo’s Story - Substance Use Disorder (SUD) Denial

Growing up as a hemophiliac, though challenging at times, was predictable. Knowing what to do and where to go when a bleed came on was easy. The steps were always the same. Call my doctor, ice, infuse. I always knew where to go and how to get help. This was not the case when I found myself struggling with substance use.

Read Maria & Her Son’s Story - Mental Health Denial

On October 26th, 2021, I got a call from my 15-year-old son that he had been in a car accident. I was distraught when I learned that the crash was actually an attempted suicide. Not knowing what to do next, I called the social worker at the hemophilia treatment center for advice and she recommended that we go to the emergency room at our local hospital.

Read Sarah & Her Son’s Story - Mental Health Denial

My son, Chris, was diagnosed with severe Hemophilia A in 2004 at 8 months old following a muscle bleed in his left arm. While terrified, we were lucky to have access to treatment and were embraced by the bleeding disorders community. The Hemophilia Treatment Center (HTC) team summed it up when they told us he had hemophilia, saying “We know this is scary, but it’s the best diagnosis of all possibilities – and you’re not alone. We’ve got you.”

Read Georgia & Her Son’s Story - Mental Health Denial

In addition to his hemophilia, we knew that something was different about my son from an early age. He wasn’t an easy baby, the terrible twos were so much worse than terrible, and he had almost daily tantrums that lasted for hours. He was finally diagnosed with ADHD and a mood disorder when he was five. It was at this time that he started therapy and medication.

Read Jackie & Her Patient’s Success Story - Mental Health Success

In early 2023, I learned that one of my patients was being denied inpatient psychiatric treatment due to her bleeding disorder. The patient was in the emergency room for over 72 hours waiting placement after a suicide attempt. She was accepted into a facility, which later denied her after learning she had a bleeding disorder.