PTSD & Bleeding Disorders: What Does It Mean

PTSD & Bleeding Disorders: What Does It Mean

Interview with Amanda Stahl MSW, LICSW
Posted: January 31, 2023. Originally printed in NEHA’s Fall 2022 Newsletter.


Amanda Stahl MSW, LICSW is a clinical Social Worker at the Boston Hemophilia Center. She teamed up with social workers from Mt. Sinai in New York City and the M Health Fairview Center for Bleeding and Clotting at the University of Minnesota to conduct a study regarding posttraumatic stress disorder (PTSD). Their research looks at the prevalence and characterization of posttraumatic stress disorder and posttraumatic stress symptoms among people with hemophilia A and B. Their research will help the members of our community better understand how this condition may impact their mental health.

What made you curious about this topic?

In 2019, I attended a social work continuing education seminar at the Brigham and Women’s Hospital on the experience of trauma for survivors of domestic violence. Because survivors of domestic violence are mostly women, the session left me wondering how trauma may impact my patients with hemophilia who are mostly males – would the impact be the same? Would trauma manifest differently?

It made me step back and consider the life experiences of our patients in the context of their chronic illness. Many events in the life of a person with hemophilia could be potentially traumatizing, and past studies on health-related quality of life verify that. Research shows that health related quality of life is negatively impacted by specific events related to hemophilia including hepatitis, disability, acute bleeds, and arthropathy. But do our patients consider these events to be traumatic? And if so, what is the burden of their trauma symptoms? How can we, as their providers, better screen for trauma and consider approaches to prevention? More and more questions on this topic keep popping up.

What do you hope will come from this study?

Trauma is not just about an event that took place in the past, but about how that event has shaped our ability to cope with life’s challenges. Trauma can rewire our brain’s stress response to cause us to be more reactive rather than responsive to ordinary stressors.

With our study, we hope to shed light on the experiences of trauma in those with hemophilia so that we can adopt better trauma informed care models in our treatment centers. Depending on our findings, we hope to develop better prevention or mitigation strategies for our patients and better screening tools for providers. Without a diagnosis, PTSD is impossible to treat.

Initially, we hypothesized that acquiring an infectious disease like HIV or Hepatitis C would be the most frequently identified source of trauma for our patients, but we were mistaken. In collecting our data, we decided to group identified traumatic events into the following four categories: non-infectious medical event, psychosocial, pain, and infectious disease. Some people identified experiencing trauma that could fit into more than one of these categories.

So far, the data is showing that non-infectious medical events like bleeds or acute hospitalizations are among the most frequently identified traumatic events experienced by those with hemophilia. Our official results should be released in a few months.

What is PTSD and how does it impact the bleeding disorders community?

It’s common for people to think one must experience combat or live through significant physical abuse to encounter trauma, but that is simply not true. Many people encounter trauma in their lives, and research shows that the impact of trauma can be significant no matter the source. PTSD is a member of the anxiety disorder family. Most people have heard about the fight, flight, or freeze response when faced with a traumatic event. Clinically, when thinking about PTSD diagnosis, we look for symptoms of avoidance (of reminders of the event), arousal symptoms, or hypervigilance, and intrusion symptoms like having flashbacks or nightmares.

If you have a chronic illness, these symptoms may present a little differently than in traditional PTSD. Avoidance might look like not taking your medications or not coming to clinic visits. It can also look like attempts to numb or dull your emotions, perhaps by excessive substance use. Arousal symptoms might be tied to something in your body – maybe if you feel pain, you are reminded of a painful bleed or scary hospitalization. This may cause anger, irritability, and challenges with sleep. Intrusion symptoms might be more future oriented in someone with a chronic illness; rather than having flashbacks (which are of course still possible and make it difficult to stay in the moment) you might be afraid of worsening symptoms, or future accidents, hospitalizations, passing along the disease to the next generation, etc.

Sometimes when our patients present with anger, they are masking a deeper, more difficult emotion like shame, weakness, vulnerability, or helplessness. This can often be tied to the experience of trauma.

What would you recommend to help someone cope with trauma or to someone who thinks they might have PTSD?

Talk to your social worker at your HTC, who can help with mental health support. You may want or need additional support in terms of therapy. Many therapists have waitlists right now, but online platforms like Betterhelp and Talkspace offer virtual therapy appointments.

In the meantime; yoga, deep breathing, or other exercises can be helpful coping tools. Allowing our bodies to have experiences that contradict feelings of shame and weakness help allow us to be more present in the moment rather than focus on the pain of the past or worrying about the future.

Engaging in your community is also helpful. Processing feelings and events with a group of people who have experienced something similar can be extremely cathartic. I am genuinely grateful that our patients have NEHA to offer such a strong community of support.

Is there anything you might recommend to parents who worry about their kids developing PTSD?

1. Take care of yourself!

Kids are rarely doing better than their parents. Taking care of yourself IS taking care of your kids. In the airplane analogy, put your oxygen mask on first, and make time for self-care, whether that’s taking a short walk, carving out time for you and your spouse, or doing something else you enjoy. Your emotional stability is important for your kids’ development.

2. Let your kids feel their feelings.

Our society puts a lot of pressure on kids and their parents to be “happy” and “successful” as if those are end goals. I would encourage parents to consider focusing their energy on building up their kids’ resilience to prepare them to take on life’s inevitable challenges.

When our kids show big (sometimes rational, and sometimes seemingly irrational) emotions, our natural reaction might be to minimize their feelings with statements like “calm down” or “stop crying”. Instead, try using these opportunities to help your child feel more comfortable tolerating distress. You can model this for them and validate what they are feeling. Instead of saying “you’re fine” when they are showing big feelings, you can try “you don’t want this to be happening, I hear you. It’s ok to feel upset.” Notice how their big feelings are making you feel as a parent. Try to name those feelings. Help your kids name these feelings. Know they will pass. As cheesy as it sounds, you have to feel to heal.

Amanda Stahl is the clinical social worker for the adult patients at the Boston Hemophilia Center through Brigham and Women’s Hospital.

NEHA recently launched an online Mental Health resource hub to help our community address their mental health concerns. To see their resource links and helpful information click here.