It is easy to spot physical damage, such as swollen joints, nosebleeds, limping and bruising, when a person suffers from a bleeding disorder. But the psychological and emotional damage that can result is not so easy to see or treat.
An American study of hemophiliacs published a few years ago in the journal Patient preference and adherence, concluded that 93% of the study participants had depression, while 92% had anxiety. In addition, 28% reported having moderate to severe depression and 13% had moderate to severe anxiety.
Mental Health Awareness Month, held in May, is a good opportunity to pay more attention to these types of issues.
Stress and bleeding disorders
I have experienced both depression and anxiety when dealing with von Willebrand disease (VWD) and hemophilia B. Bleeding disorders cause stress in many ways, including failed medical procedures, frequent infusions, financial stress, access to health care problems, and even the impact of HIV /AIDS and hepatitis for those living in the 1970s and 1980s. In addition, COVID-19 has created more stress for everyone.
Bleeding often happens at inopportune times. I often feel like I have no control over my body. For example, I had a cervical biopsy. A few days later my sister and cousins visited me in Florida. A theme park trip was my Christmas present to them. We were having a lovely time when I suddenly started bleeding profusely. I didn’t want to tell my family about the problem, but in the end I had to. We left early and I felt terrible.
Then a home nurse came to administer Humate-P infusions to treat my VWD. Unfamiliar with bleeding disorders and the drug, the nurse mixed the medication incorrectly once and on another occasion she canceled one of my infusions. As a result, I needed anti-anxiety medication for those appointments. This motivated me to learn how to infuse myself.
The uncontrollable menstrual bleeding I used to have was also terrifying, and when the treatment didn’t work, feelings of depression set in. I had such high hopes for the treatment and couldn’t understand why it wasn’t working. I questioned my doctors and my diagnosis. Now I know I need factor replacement medication for both VWD and hemophilia B (factor IX deficiency).
Posttraumatic stress disorder
I also think I have medical post-traumatic stress disorder. PTSD is a mental illness that is caused by experiencing or experiencing a terrifying event. According to the Mayo Clinic, symptoms can include flashbacks, nightmares, severe anxiety and uncontrollable thoughts about the event.
In the 1970s and 1980s, what our community called the “hemophilia holocaust” changed the lives of everyone who experienced it. In a recent interview, bodybuilder LA Aguayo, who has severe haemophilia, told me: “Those who lived through the 1970s and 1980s and were diagnosed with AIDS and hepatitis from contaminated blood products have been through the most difficult times. We have a responsibility to keep pushing and sharing with others and creating change. There are still so many resources we need as a community to live fulfilling lives.”
dr. Eric Russ, a clinical psychologist with expertise in the assessment and management of traumatic stress, recently delivered a webinar on trauma and PTSD for the Hemophilia Federation of America. According to Russ, healthy ways to deal with stress include taking deep breaths, taking breaks, and setting boundaries. Other tactics include creating routines and schedules, connecting with important people in your life, seeking help when needed, and building “meaning” into your day in the form of advocacy or education.
The organization Mental Health Matters Too is on a mission to normalize mental health conversations in the bleeding disorder community and direct resources for mental wellbeing and care. The 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 in 1994 with severe hemophilia. Debbie received a master’s degree in counseling psychology from the University of Houston and became a licensed professional counselor in 1989.
I write and build a website to promote advocacy and education for people with bleeding disorders, especially women. LA Aguayo connects with people on Instagram and coaches others to make positive changes in their lives through physical activity and nutrition.
What ideas do you have for ‘meaning’ in your life? Please share it in the comments below.
Remark: 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 advice from your doctor or other qualified healthcare professional if you have any questions about a medical condition. Never disregard professional medical advice or delay your search 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 initiate discussion on issues related to: haemophilia†