Overcoming Barriers to Treatment for Those with a Diagnosis of PTSD
Authored by: Kim Phelan, COO of The Coalition for Hemophilia B
In observance of National PTSD Awareness Day on June 27th, BD SUMHAC is taking the month of June to highlight post-traumatic stress disorder (PTSD). PTSD is a serious mental health condition that affects many people, including those in the bleeding disorders community.
PTSD can develop in people who have experienced or witnessed a traumatic event. Contrary to common belief, PTSD can affect anyone of any age and status, not just military personnel. According to the National Institute of Mental Health (NIMH), even those who learn about trauma secondhand through friends or family members can develop PTSD. Currently, an estimated 12 million people in the United States have PTSD, yet many do not receive treatment. This is especially concerning for individuals with bleeding disorders, who not only contend with the existing stigma surrounding PTSD, but also often encounter barriers accessing inpatient or residential mental health treatment due to their bleeding disorder.
Statistics reveal that approximately 6 in 10 men (60%) and 5 in 10 women (50%) will experience at least one traumatic event in their lives, potentially leading to the development of PTSD. The prevalence of PTSD is higher among individuals with bleeding disorders due to disease-related traumatic events.
While some individuals may recover from initial trauma symptoms over time, those whose symptoms persist may receive a diagnosis of PTSD. Symptoms typically emerge within three months of the traumatic event and are disruptive to daily life, including relationships and work.
PTSD can be successfully treated with various therapy techniques and medications, but many do not seek help. Treatment options may include Cognitive Behavioral Therapy (CBT), Eye Movement Desensitization and Reprocessing (EMDR), and medication if needed.
We do not fully understand all the reasons why PTSD develops in some individuals while not in others. Contributing factors may include stressful experiences, inherited mental health risks, personality traits, or the brain's regulation of stress-related chemicals and hormones. Only a trained professional can diagnose PTSD. But here is a PTSD Self Screen Test you can take to see if you or someone you know may have it: https://www.ptsd.va.gov/screen/.
Diagnosis of PTSD can be challenging as patients often seek help for physical symptoms without mentioning their trauma history.
I reached out to one of the leading experts in the field, Amanda Stahl, MSW, LICSW, a social worker at the Boston Bleeding Disorders Center to further touch on how PTSD directly affects people with bleeding disorders. Amanda is the author of Posttraumatic stress disorder and posttraumatic stress symptoms among adults with hemophilia A and B, which found that adults with hemophilia experience PTSD at rates 3 times higher than the general population.
Amanda explained “Trauma symptoms in bleeding disorders might look different than in traditional PTSD, particularly as it pertains to avoidance and arousal symptoms. Imagine experiencing something traumatic related to your bleeding disorder and then having constant reminders of the event through ongoing medical interventions. It makes sense that you could be preoccupied by what happened to you, and become easily irritable, or even angry and reactive. Maybe you stop going to clinic visits or turn to substance use to avoid these feelings of distress.” Recognizing the impact of trauma, the stigma and barriers surrounding PTSD and its treatment is crucial. “There is a link between childhood trauma exposure and development of substance use disorders later in life, so it’s critical to address and prevent trauma exposure as best we can in a medical setting.”
Amanda also reminds us that, “PTSD in bleeding disorders is complex, making it harder for providers to recognize some behaviors as trauma symptoms because they might differ from the traditional notion of PTSD that we think of in veterans like flashbacks and hypervigilance.”
PTSD symptoms are typically categorized into four clusters:
Intrusion Symptoms:
Nightmares, trouble sleeping
Flashbacks/Recurrent, unwanted distressing memories of the traumatic event
In bleeding disorders this may also include intense fear of an upcoming procedure, appointment, worsening symptoms, etc.
Avoidance Symptoms:
Severe emotional distress or physical reactions to something that reminds you of the traumatic event
Trying to avoid thinking or talking about the traumatic event; avoiding places, activities, or people that remind you of the traumatic event.
In bleeding disorders this can include avoidance of medical appointments, treatment, delaying contacting your provider, and sometimes use of substances to avoid challenging feelings in your body.
Cognitive/Mood Related Symptoms:
Negative thoughts about yourself, other people, or the world
Hopelessness about the future
Difficulty maintaining close relationships
Lack of Interest in activities you once enjoyed
Difficulty experiencing positive emotions or feeling emotionally numb
Overwhelming guilt or shame
Suicidal Thoughts
Arousal/Reactivity Symptoms:
Irritability, angry outbursts, or aggressive behavior
Engaging in risky, reckless, or destructive behavior such as drinking too much or driving too fast
Trouble concentrating
Hypervigilance in bleeding disorders may be tied to symptoms in your body like a bleed, etc which may trigger reactivity symptoms
No one should face PTSD alone. It's imperative to break down the barriers to care surrounding this mental health disorder. If you need assistance in finding treatment for PTSD, social workers and other healthcare providers can help connect you to needed care. For denials of PTSD treatment based on a diagnosis of a bleeding disorder, BD SUMHAC has toolkits and resources to support you. Reach out today! Please note, BD SUMHAC is an advocacy organization and does not provide behavioral health treatment
Advocacy Organizations
Anxiety & Depression Association of America
American Psychiatric Association
Mental Health America
National Alliance of Mental Illness
National Center for PTSD
PsychU
References
Mayo Clinic (2022). Post-traumatic stress disorder (PTSD). Retrieved from https://www.mayoclinic.org/diseases-conditions/post-traumatic-stress-disorder/symptoms-causes/syc-20355967
National Institute of Mental Health. (2024). Post-traumatic Stress Disorder. U.S. Department of Health and Human Services, National Institutes of Health. Retrieved from https://www.nimh.nih.gov/health/topics/post-traumatic-stress-disorder-ptsd
Stahl, A., Barnett, K., Wilson, A. K., Ren, S., Neuberg, D., Park, H. S., & Parnes, A. (2023). Posttraumatic stress disorder and posttraumatic stress symptoms among adults with hemophilia A and B. Research and practice in thrombosis and haemostasis, 7(8), 102241. https://doi.org/10.1016/j.rpth.2023.102241
Tetheredtoptsd (2024). Understanding the clinical course of PTSD. Retrieved from https://tetheredtoptsd.com/symptoms-and-diagnosis
U.S. Department of Veteran Affairs (2022). PTSD Self-Screen. Retrieved from https://www.ptsd.va.gov/screen/