Hemophilia and mental health

Living with a chronic and unpredictable illness like hemophilia can take a significant emotional toll and negatively influence a person’s mental well-being. Mental health is key to maintaining a good quality of life, so it’s important for individuals to monitor their well-being and seek help when needed.

Hemophilia is characterized by excessive and prolonged bleeding episodes, which can occur after an injury or, in severe cases, spontaneously. Related complications, such as joint damage and pain, may arise over time.

Dealing with these unpredictable symptoms and the burden of the medical care needed to manage them can substantially affect daily life, leaving people with hemophilia and their caregivers at an increased risk of mental health issues such as depression and anxiety.

However, there are many ways to develop healthy coping strategies, ranging from making lifestyle changes to seeking counseling and support groups. While these conversations can be hard, it’s important that patients talk with their hemophilia care team when struggling. Doctors and other healthcare providers can help connect individuals living with the condition with experts and valuable resources for managing hemophilia and mental health challenges.

Accepting the diagnosis

A hemophilia diagnosis can leave patients and caregivers feeling very overwhelmed. Coming to terms with the diagnosis may involve cycling through a range of emotions, such as confusion, anger, fear, and grief.

Patients and families should give themselves permission to feel these emotions and express them in healthy ways. Talking to family, friends, or a mental health professional can be beneficial.

A hemophilia diagnosis does not necessarily mean that a person has to limit the activities they enjoy, according to Jackie Bottacari, a licensed clinical social worker. She provides mental healthcare at the Yale Center for Bleeding and Clotting Disorders at the Yale Hemophilia Treatment Center in New Haven, Connecticut.

Instead, it means acknowledging the disease as part of life and finding ways to manage and thrive. Educating oneself about hemophilia can help demystify the disease and empower individuals to make informed decisions about living with it.

Anxiety

The unpredictable nature of hemophilia can lead to worry and fear, and people with the bleeding disorder are at an increased risk of anxiety compared with their peers in the general population, though data vary on the exact prevalence. Anxiety symptoms can include:

• excessive worrying
• restlessness
• difficulty concentrating
• muscle tension and headaches
• inability to sleep

Bottacari notes that not everyone with hemophilia has the same stresses and anxieties. According to the social worker, possible sources of anxiety in hemophilia include:

• unpredictable hemophilia symptoms and fear of hospitalization
• fear of needles or blood draws
• worry about being different from peers, especially for teens
• pressure to keep up with work and family life
• worry about the future
• economic concerns
• activity restrictions
• concerns about treatments and side effects

“It’s really important to remember that your hemophilia doesn’t mean that you are restricted and you’ll be in a bubble your whole life,” says Bottacari. She points out that there are coping strategies that can help with anxiety, such as therapy, exercise, and stress management.

Depression

Depression is a mood disorder characterized by persistent feelings of sadness and a lack of interest or pleasure in daily activities. The emotional impact of hemophilia  can contribute to the development or worsening of depression.

As with anxiety, people with hemophilia are at a higher risk of depression than individuals in the general population. The exact number varies by study, but one large analysis found that more than 40% of people with the bleeding disorder have some symptoms of depression, while approximately 15% were formally diagnosed with the mood disorder.

Depression can cause emotional distress, social withdrawal, and the inability to work or take care of oneself.

“People with hemophilia tend to isolate themselves,” says Bottacari, who also works with the Bleeding Disorders Substance Use and Mental Health Access Coalition. “We know that the more you isolate yourself, the harder it’s going to be to accept treatment and really work on those depressive symptoms.”

Treatment for depression can include counseling and therapy, and lifestyle changes and mindfulness and relaxation techniques can help. Hemophilia support groups can be key. In some cases, medications may be effective.

Daily coping strategies

It’s important to come up with everyday strategies for coping with hemophilia stress. Among healthy coping strategies are:

• setting a schedule and having realistic goals for the day
• maintaining a healthy work-life or school-life balance, including communicating about necessary work or school accommodations
• talking with family and friends about feelings and worries
• trying relaxation techniques such as yoga, gentle stretches, and meditation
• sticking to a hemophilia treatment plan, as advised by one’s care team

Deciding which coping strategies to use to help keep mental health in balance is a matter of personal preference, but it may be helpful to try different approaches. Perseverance is also important.

Counseling and therapy

In some cases, it can be beneficial to seek professional help for mental health concerns in the form of counseling or therapy. A hemophilia care team can provide recommendations for mental health professionals, such as psychologists, psychiatrists, and licensed therapists.

In her practice, Bottacari uses cognitive-behavioral therapy (CBT), which helps people identify and change negative thought patterns and behaviors. For example, when individuals get a nosebleed, they might automatically become discouraged and think they’ll never stop bleeding. CBT focuses on redirecting that thought pattern by encouraging a person to think about how long it usually takes for a nosebleed to stop or remembering that medications can be taken in such situations.

“It’s getting [individuals] to see that their first automatic thought, which is causing anxiety and stress, isn’t true,” she says. “Reframing their thinking helps reduce the stress and anxiety they’re feeling.”

Mental health counseling for a person with hemophilia may also include:

• mindfulness-based exercises to reduce stress
• supportive counseling, which offers a safe space to express emotions, concerns, and fears
• problem-solving therapy, which can help develop the skills to address the daily challenges of hemophilia
• coping skills training, which offers practical techniques to foster resilience and adaptability

Counseling can be individual or take the form of family or group therapy. Parents, who often feel stress or guilt related to their child’s diagnosis, often also benefit from counseling. This is especially true of mothers, because the genetic disorder is usually passed down from mother to son, according to Bottacari.

“We do a lot of reframing work with parents,” she says, adding that parents need to keep in mind that their child inheriting hemophilia is not something they could have controlled. She says some parents may avoid talking about the disease or pretend it doesn’t exist, and that neither of those approaches is healthy.

Support groups

Support groups can be invaluable resources for information, social connection, and emotional support.

Individuals can ask their local hemophilia treatment center about support groups. Social workers and other mental health professionals at the center may personally offer support groups or have suggestions for other in-person or online options. Organizations that can help connect individuals with others in their local hemophilia community include:

• the National Bleeding Disorders Foundation
• the Hemophilia Federation of America
• Bleeding Disorders Canada (formerly the Canadian Hemophilia Society)
• the World Federation of Hemophilia

The forums on the Hemophilia News Today website include groups discussing a wide range of topics related to living with hemophilia. Another option is to check the site’s Facebook page.

Lifestyle changes

Lifestyle changes can support a person’s overall physical and mental well-being. For people with hemophilia, following a healthy lifestyle can help. That may include:

• ensuring daily, low-impact physical activity, tailored to individual needs and abilities
• eating a healthy diet
• reducing alcohol consumption and quitting smoking
• getting enough sleep

People with hemophilia often socially isolate themselves, but it’s important to try to connect with others and stay socially active, according to Bottacari.

“It’s a very difficult thing to engage with other people,” she says, encouraging small steps. “Try, little by little, to engage with one other person, then maybe two people, and gradually work your way up to a group of people.”

Individuals can work with their hemophilia care teams to come up with a healthy living plan that makes sense for their personal needs and preferences.

What to do in a mental health emergency

Even with the right approach to mental healthcare, a mental health crisis can happen. It’s important to have a plan in place, so that it’s clear what to do and whom to contact should one arise.

Warning signs of a mental health crisis may include:

• intense changes in mood, such as increasing feelings of irritability, anger, or sadness
• inability to function in daily tasks or take care of hygiene
• dramatic changes in sleep habits
• withdrawal from others
• increased alcohol or substance use
• hallucinations, delusions, or paranoia
• thoughts of suicide or self-harming behaviors

For people with a mental health provider who think they’re having a mental health crisis, Bottacari suggests calling that specialist — the doctor or therapist may have an after-hours or emergency line if it’s not regular office hours. Going to a psychiatric urgent care clinic or the emergency room is another option.

Anyone having suicidal thoughts should reach out immediately for help from a counselor at a crisis line. In the U.S. and Canada, individuals can:

• call or text 988 to reach a suicide crisis helpline (U.S./Canada)
• text the Crisis Text Line at 741741

Individuals who have served in the military can call 988 and press 1 or text 838255 to reach the Veterans Crisis Line.

For people in other areas, country-specific crisis text lines are available. Country-specific hotlines can be found at Suicide Stop or Befrienders Worldwide.

In any situation in which a person’s safety is at immediate risk, it’s crucial to call the local emergency number, such as 911, right away and inform responders that a mental health crisis is unfolding.

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Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.