PTSD Can Affect People with Bleeding Disorders

While post-traumatic stress disorder is commonly connected with soldiers, people battling chronic illnesses can have it, too. Here’s how to identify the symptoms and get the help you need.

Justin Levesque had no physical symptoms of hemophilia, but he still felt unwell. “I was just getting nauseous all the time and feeling sick and tired whenever I went out in public, and I wasn’t functioning socially,” says Levesque, 37, an artist based in Portland, Maine. “I basically felt terrible.”

He describes it as a “mental storm,” but it goes by another name in medical literature: post-traumatic stress disorder, or PTSD, a condition that affects about 12% of adults with hemophilia, most of whom are men — and that is only now being fully understood.

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In a study of 178 people with hemophilia, 101 reported having experienced a traumatic event related to their disease, according to study author Amanda Stahl, LICSW, a social worker at the Boston Hemophilia Center at Brigham and Women’s Hospital. Of those who experienced trauma, 82% described it as chronic, meaning it was not a single incident.

“When you go through a medical trauma,” Stahl says, whether it’s a bleed, developing an inhibitor, or an unpleasant childhood memory of needles, “it can really challenge your ability to cope. It can impact your identity and inform how you view the world. Once you experience repeated traumatic stressors, your body can become programmed to react to ordinary stress the same way it would as if you were experiencing something more traumatic.”

That’s what happened to Levesque, who had an inhibitor that was resolved once he started taking a new medication for his hemophilia. The good news was that the drug ended his bleeding episodes and he spent less time on daily and weekly disease treatments. But it also gave him more time to think.

Putting Out New Fires

Without the daily fears of hemophilia, Levesque says, he was beset by memories and thoughts that he hadn’t had time to contemplate before. “All of a sudden, I wasn’t putting out fires every day or thinking about the problem right in front of me,” he says. “And the rest of the train sort of catches up to the front here, and it’s a crash, basically.”

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Stahl says that a diagnosis of PTSD includes exposure to a traumatic event, followed by the following symptoms:

Stahl’s study revealed that one-third of the participants could identify a traumatic event and went on to experience at least one of these symptoms.

Christi Humphrey, LCSW, a trauma-informed social worker at Hemophilia of Georgia, says people with hemophilia often have traumatic memories of childhood medical experiences that are “alive and well when the person has contact with the medical field. A strategy can develop where they escape the feelings by avoiding infusions or doctor’s appointments, or avoid talking about what happened.”

Levesque says he realized how traumatized he was by memories of being held down for painful injections as a child. Today, with the help of a trauma-informed therapist and medication, he feels better. “The difference is like night and day,” he says.

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Help Is Available

It’s important for people who are having PTSD symptoms to understand that it’s not unusual and that they’re not alone, Humphrey says. “Your brain is designed to protect you, and it will go to great lengths to ensure your survival, including causing feelings designed to avoid fearful experiences,” she says.

“Finding solutions starts with acknowledging the distressing thoughts, memories, and feelings. Seeking help from trained providers can start the process of change and open doors to new emotional experiences.”

EMDR Therapy May Be Beneficial

Many people with PTSD are finding relief with eye movement desensitization and reprocessing (EMDR), says Humphrey, who is trained in the therapy.

EMDR is a technique in which a therapist guides a person through a series of standardized eye movements designed to stimulate brain activity. The goal is to help people identify ways to feel safe before exploring difficult memories, then learn to reprocess those memories so they don’t cause symptoms.

“Every night in rapid eye movement (REM) sleep, the brain naturally processes situations and ideas from the day,” Humphrey says. “EMDR mimics REM sleep to help with more traumatic memories and situations that are not as easily processed by the brain.” The therapy “takes the traumatic memory and helps the brain process it in new ways so the memory can become more emotionally tolerable.”

To be effective, the first step in the process requires developing a bond with a therapist, Humphrey says. While EMDR therapy does not work overnight, she says, it can be very effective at treating PTSD pain and trauma.

If you’re experiencing symptoms of PTSD, contact your hemophilia treatment center for a referral to a mental health professional.

Source: National Bleeding Disorders Foundation, August 2024

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