Managing Bleeding Disorders Requires Attention to Mental Health

it’s easy to spot Physical damage, such as swollen joints, nosebleeds, limping, and bruising, when suffering from a bleeding disorder. But the psychological and emotional damage that can result is not so easy to see or treat.

USA hemophilia patient surveypublished a few years ago in the magazine Patient preference and adherence, concluded that 93% of the survey participants experienced depression, while 92% had anxiety. Additionally, 28% reported moderate to severe depression and 13% moderate to severe anxiety.

Mental Health Awareness Month, which falls in May, is a good opportunity to draw more attention to these kinds of issues.

Stress and bleeding disorders

I have experienced depression and anxiety when dealing with von Willebrand’s disease (EVW) and hemophilia B. Bleeding disorders cause stress in many ways, including from failed medical procedures, frequent infusions, financial stress, problems accessing care, and even the impact of HIV/AIDS and hepatitis for those who lived through the 1970s and 1980s. COVID-19 has added more stress for everyone.

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bleeding often happens at inopportune times. I often feel like I have no control over my body. For example, I underwent a cervical biopsy. A few days later, my sister and nephews visited me in Florida. A trip to a theme park was my Christmas gift to them. We were having a great time when all of a sudden I started bleeding a lot. I didn’t want to reveal the problem to my family, but finally I had to. We left early and I felt horrible.

Later, a home care nurse came to administer Humate-P infusions to treat my VWD. Unfamiliar with bleeding disorders and medication, the nurse once mixed the medication incorrectly and another time canceled one of my infusions. As a result, he needed anti-anxiety medication before those appointments. This motivated me to learn how to self-infuse.

The uncontrollable menstrual bleeding she used to experience was also terrifying, and when treatment didn’t work, feelings of depression arose. She had high hopes for the treatment and didn’t understand why it wasn’t working. I questioned my doctors and my diagnosis. I now know that I need factor replacement medications for both VWD and hemophilia B (factor IX deficiency).

post-traumatic stress disorder

I also think I may have medical PTSD. PTSD is a mental health condition that is triggered by experiencing or witnessing a frightening event. According to the Mayo ClinicSymptoms can include flashbacks, nightmares, severe anxiety, and uncontrollable thoughts about the event.

In the 1970s and 1980s, something our community refers to as the “hemophilia holocaust” changed the lives of everyone who experienced it. In a recent interview, the bodybuilder LA Aguayo, who has severe hemophilia, told me: “Those who lived through the ’70s and ’80s and were diagnosed with AIDS and hepatitis from contaminated blood products had the most difficult times. We have a responsibility to keep pushing and sharing with others and creating change. There are still so many resources that we need as a community to live a full life.”

Dr. Eric Russ, a clinical psychologist with experience in the assessment and treatment of traumatic stress, recently conducted a trauma and PTSD webinar for the Hemophilia Federation of America. According to Russ, healthy ways to deal with stress include taking deep breaths, taking breaks, and setting limits. Other tactics include creating routines and schedules, connecting with important people in your life, seeking help when needed, and building “meaning-making” into your day in the form of advocacy or education.

Means

The organization Mental health matters too has a mission to normalize conversations about mental health in the bleeding disorders community and provide guidance on resources for mental health and wellness. Their website has a lot of related material, including a screening tool and a list of resources.

The organization was founded by Debbie de la Riva, whose son was born with severe hemophilia in 1994. Debbie earned a master’s degree in counseling psychology from the University of Houston and became a licensed professional counselor in 1989.

I write and am creating a website to promote advocacy and education for people with bleeding disorders, especially women. LA Aguayo connects with people on Instagram and empowers others to make positive changes in their lives through physical activity and nutrition.

What ideas do you have to “give meaning” to your life? Please share in the comments below.

Note: Hemophilia News Today is strictly a disease news and information website. 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 care 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. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews, and are intended to spark discussion on issues related to hemophilia.