In the U.S., 40 percent of the total population is living with a chronic illness,1 which can cause significant disruption to a person’s life. While open and honest conversations about the physical symptoms of these conditions are standard practice, it’s time we talk about the mental health impacts as well.
For people living with a chronic illness, the condition could be long-term or may never go away. Even when well-managed, there is recognition that the condition can continue to be disruptive to a person’s life. Impacts range broadly, but often require patients to make adjustments to their aspirations, lifestyle and for some, to their livelihood.
Generally, the physical impacts of a chronic illness are the focus of conversations between patients and their care teams. What is less well understood and often unknown is the correlation between the physical symptoms of a chronic illness and the patient’s mental health. For people living with hemophilia, a chronic and rare blood disorder that causes the blood to not clot properly due to a lack of a coagulation factor, tracking on both the physical and mental aspect outcomes of the disease (patient-reported outcomes) have been both limited and inconsistent, as have adjustments to comprehensive care for individuals.2
A simple, powerful epiphany
For Dana Francis, a licensed clinical social worker at University of California San Francisco, he’s always felt the hemophilia community is like a microcosm of the larger world. In his role as a mental health professional, he has supported people living with hemophilia for more than 30 years.
“In 2018, I was a part of a panel discussion about the emotional impact of hemophilia. During the discussion, one of the doctors on the panel come out from behind the lectern, turned off the mic and told everyone to sit in a circle to just talk,” explains Dana. “It was like an epiphany for all of us. Instead of me talking about psychosocial issues, we asked them about their experiences and what support they needed.”
For Dana, much of the work he does isn’t necessarily written in a job description. He tries to ask questions in a way that requires people to look at their own humanity in a broader sense and not be afraid of it. In his experience, people who are comfortable talking about their experience are more likely to reach out and ask for help.
Asking for help is important and evidence shows depression co-occurs in people living with a variety of chronic conditions. For example, in 2012, the CDC found 17% of cardiovascular cases, 23% of cerebrovascular cases, 27% of diabetes patients and more than 40% of individuals with cancer.3 People living with epilepsy, multiple sclerosis, Alzheimer’s disease, HIV/AIDS, Parkinson’s disease, systemic lupus erythematosus, atopic dermatitis and rheumatoid arthritis also had an increased prevalence of depression.3
“I think we all need support. Whether it's from our friends or our family, it’s important we can share the issues that we're struggling with and others can give us support and strength,” notes Dana. “But friends and family are not always enough. Sometimes you have to think to yourself ‘I’m going to see if I have a good fit with someone to get help for what has been holding me back.’”
A simple, powerful response
Even mild depression may reduce a person's motivation to gain access to medical care and to adhere to recommended treatment plans.4 Yet, the impact of chronic conditions on a person’s mental health are often overlooked and those who treat chronic conditions are best equipped for the clinical aspects of care – not always the psychological, social, and cultural dimensions of illness and health.
For people living with hemophilia, the physical symptoms of the disease, such as compromised mobility and severe pain, are typically openly discussed with their care team, but the impact of living with hemophilia on a person’s mental health is often both invisible and unspoken. For example, in a small 2007 study of adult men with hemophilia conducted by researchers at the Arizona Hemophilia and Thrombosis Center (AzHTC), 37% of men surveyed reported that they experienced depression.
Patrick James Lynch, the co-founder and Chief Executive Officer of multimedia content agency Believe Limited, felt the mental health challenges of the bleeding disorders community were not being met. With a mission is to create entertainment that inspires change through storytelling, Patrick and Believe Limited decided it was up to them to spark an open, difficult conversation about mental health.
“It always felt like mental health was someone else’s responsibility. But a few of us in the community took the ‘enough is enough’ approach,” explains Patrick. “We were doing showings of a film that was really resonating with the bleeding disorders community and the lightbulb turned on. Mental health can also be largely invisible unless people speak to it – a film could do just that. Let’s Talk is an immersive journey with five people in the bleeding disorders community who open their hearts and candidly share the struggles and moments that brought them strength.”
Community and close friendships exist within the bleeding disorders community, but the primary focus of most conversations has largely been on the physical experiences with less openness to conversations about the emotional or psychological challenges faced. Let’s Talk is about feelings of guilt, grief, uncertainty, isolation, stress and sadness among people who live with a chronic condition.
“We seem to have the same 10% of the conversation 100% of the time. We’re really good at addressing the parts that are comfortable, but we have to keep talking about things that feel personal and difficult,” notes Patrick. “Kevin Love wrote ‘Everyone is Going Through Something’ and explains how can all play a role in contributing to an environment where it’s easier to talk about mental health. It’s up to people like me to keep amplifying voices who are willing to generate the difficult conversations so we don’t keep cycling through the same discussion again and again."
People may not get the mental health support they need because they don’t know where to start. If you do not have a health professional who is able to assist you, use these resources to find help for yourself, your friends or your family: https://letstalkmh.com/resources.
“I can contribute to a judgement-free environment, but it is ultimately up to individuals to engage with the resources. It’s got to come from within,” states Patrick.