When it comes to mental health, simply having a chronic disease, such as a bleeding disorder, puts a person at greater risk of depression.
It’s estimated that 1/3 of people who have a serious medical condition also have symptoms of depression. A 2007 study of adult men with hemophilia conducted by researchers at the Arizona Hemophilia and Thrombosis Center (AzHTC) at the University of Arizona Health Sciences Center in Tucson found that number was accurate among the small group it studied. In the AzHTC study, 37% of men surveyed reported that they experienced depression.
A troubling cascade
It’s natural to feel sadness, stress or anxiety from time to time. And for the majority of people with bleeding disorders, just like anyone else, weathering these difficult times isn’t fun, but it’s manageable.
However, when emotional problems linger, they can lead to depression (also referred to as clinical depression) and to anxiety disorders, and these issues could cause a domino effect on people with bleeding disorders, says Laurel J. Pennick, MSSW, LCSW, a social worker at the AzHTC and a co-author of the 2007 depression study. “If you have a depressed person, they may be less likely to want to do their infusions,” Pennick says. “If you have a very depressed person, including a caregiver, they may not want to get out of bed or take care of themselves or their children.”
Depression and anxiety disorders should always be diagnosed by a qualified healthcare professional (do not attempt to diagnose yourself or someone else). If left untreated, these and other mental health conditions can interfere with regular life activities, including work and school and maintaining relationships. A mental disorder may also affect physical health, negatively impacting nutrition, sleep, the desire to exercise and the ability to stick to a treatment regimen.
Depression, in combination with other complex factors, is also linked to an increased risk of suicide. While research shows just 2% of people treated for depression in an outpatient setting die by suicide, an estimated 60% of those who take their own lives experienced a mood disorder, such as clinical depression, during their lifetime.
The benefits of HTCs
These numbers may be alarming, but compared with the general population, people in the bleeding disorders community may actually have an advantage when it comes to addressing mental health issues, says Maria Iannone, MA, LPC, a psychologist and licensed professional counselor at the AzHTC and lead author of the 2007 depression study. With assistance, Iannone says, people with bleeding disorders “can cope with mental health issues just like anyone else—and we all have mental health issues to contend with over our lifetimes.”
As part of their holistic approach to healthcare, federally funded hemophilia treatment centers (HTCs) provide comprehensive mental health assessments and care. Psychosocial support is a key component of this model. (Mental health is also recognized as a pillar of overall health in the NHF-McMaster Guideline on Care Models for Haemophilia Management, released in 2016.)
At HTCs, social workers are the primary members of the treatment team who assess patients’ mental health, says Diane Bartlett, LCSW, a social worker at St. Luke’s Mountain States Tumor Institute and a member of the National Hemophilia Foundation’s (NHF) Social Work Working Group. “When people come in for their comprehensive clinic visit, which at a minimum would be annually, we want them to have a face-to-face screening and assessment with the social worker.” These screenings “look a little different for each HTC,” Bartlett says, but the “main goal is to look at the patient as a whole—body, mind and spirit.”
In most cases, because the counselor is part of the HTC team, counseling sessions are free and available to both patients and their immediate family or caregivers. Often, the social worker can head off other ailments that can snowball into mental health issues, Pennick says. “Our counselor has identified patients complaining of insomnia who have restless leg syndrome. Not getting adequate sleep can certainly contribute to not feeling your best mentally. So the assessment is not only used for identifying depression, but for other things. It’s life care, not just mental health.”
“We look at the whole person, taking in the psychosocial as well as the medical perspective,” Iannone says. “As integrative care goes, we’re being looked at as a model by other healthcare systems nationwide.”
Stress and bleeding disorders
“We all go through anxiety and depression at some point in our lives. But when it becomes a chronic issue, that’s the concern,” Pennick says. “For those with bleeding disorders, everything is seen through that lens, so that can accentuate normal stressors.”
Financial worries related to treatment may cause stress and contribute to or exacerbate mental health issues, says Debbie de la Riva, a licensed counselor and former executive director of the Lone Star Chapter of NHF in Houston. “Financial challenges related to factor cost is a big load for some,” de la Riva says.
Depression is also the leading cause of disability in the United States among people ages 15 to 44. Concerns over the ability to work can weigh heavily on those in the bleeding disorders community. The AzHTC study found that men with hemophilia who also reported a lack of social support or problems with unemployment were more likely to be depressed.
Those in the bleeding disorders community may experience issues related to their treatment—such as needle phobia or post-traumatic stress disorder related to the HIV/AIDS epidemic, Iannone says. Overall, though, Iannone says she mainly helps people with bleeding disorders handle the same kinds of stressors all people face. “Most often I’m dealing with mental health issues that are equivalent with what I would find in the general population,” she says.
As in the general population, there’s also a push to identify and treat mental health disorders in children and teens. “It is sometimes difficult to recognize children as being anxious or depressed, but I definitely see it in children in the bleeding disorders community,” Iannone says. “Identifying and treating depression and anxiety earlier in life can lead to more resilient coping strategies.”
Depression, coupled with the normal angst of wanting to fit in, can lead children and teens to stop taking care of themselves and engage in risky behavior, de la Riva says. In both teens and adults, mental illness increases the risk of substance abuse.
Getting help
HTCs and NHF chapters have programs in place, such as summer camps for children and community wellness events, that address the psychosocial challenges of living with a bleeding disorder.
Yet while HTCs provide care to address mental health issues, not everyone takes advantage of the opportunities. “There are always going to be people who don’t subscribe to mental health care at all, regardless of the support services provided,” Iannone says.
In the US population at large, only half of people with a mental illness receive treatment, according to estimates by the National Institute of Mental Health. Continued stigma associated with mental and emotional problems keeps some from seeking treatment.
“Having a mental health problem doesn’t mean you’re a deficient person. You have to get over the internal shame that you should have it all together,” Iannone says.
Access issues
As noted above, people with bleeding disorders who use the federally funded HTC system have access to mental health care as a part of the HTCs’ comprehensive care model. While each HTC is independently run, and thus operates slightly differently, in most cases mental health assessments and counseling at an HTC are free to patients. However, not everyone is cared for at an HTC. While federal law requires that insurance providers offer the same level of coverage for mental health and substance abuse as for other medical issues, coverage details—such as in-network resources—can vary depending on your plan.
People on Medicaid often face significant restrictions in whom they can see for their mental health care, Pennick says. HTC social workers can help identify mental health resources that accept a patient’s insurance policy, including therapists who accept Medicaid. “We really try to case manage our patients as much as we can,” Pennick says.
For those who aren’t able to access an HTC, telemedicine—where a therapist meets with a patient over videoconferencing—may be a suitable alternative to in-person office visits. Phone counseling may also be an option. These alternative counseling sessions can be helpful for those who are homebound or who live in rural or remote communities, where the distance to the nearest mental health professional prevents them from getting care in person. Be sure to check with your health insurance provider whether telemedicine is an approved option on your insurance plan.
Understanding is vital
The key to mental wellness is identifying and treating mental illness the way you would a physical condition, Iannone says. “If you had strep throat, you’d take care of it. The same goes if you have depression. You can’t ignore it if you want to be well.”
De la Riva encourages family and caregivers to learn what they can do to offer support to someone living with a mental health condition or in crisis. She’s a certified instructor in Mental Health First Aid, an eight-hour course that provides a five-step action plan for identifying and addressing mental health issues. She’s taught the course to social workers and NHF chapter staff and at national conferences.
De la Riva recommends going to the Mental Health First Aid website and locating a course in your area. There are classes that focus on mental health conditions in adults, youth, college students, rural residents, public safety employees and veterans. “I encourage people to recognize what mental health conditions look like and how to have that conversation,” she says. “It’s time we break the stigma and educate ourselves.”
She also recommends joining a support group through either a local NHF chapter, an HTC or the National Alliance on Mental Illness. “Peer support is one of the most effective ways of dealing with mental health,” de la Riva says.
HTC social workers have always been on the front lines of addressing psychosocial needs, and they remain there, Pennick says. “We’re here to help,” she says. “If additional help or psychological testing is needed, we can refer people to psychologists whom we know and trust.”
If you’re struggling with mental health issues, reach out to the social worker or psychosocial provider at your HTC, Pennick says. “There are lots of resources in this wonderful community that can help you. Keep asking and keep searching for an answer that works for you.”
Get Help
If you or someone you know is struggling emotionally, the following resources offer assistance.
Screening
• Mental Health America has free, confidential mental health screening tools for depression, anxiety, bipolar disorder, eating disorders and PTSD.
• HTCs provide mental health screening to patients and caregivers
Crisis Assistance
• If you or someone you know is thinking of self-harm or suicide, get help immediately: For the
Crisis Text Line, text “HOME” to 741741; or call the National Suicide Prevention Lifeline
at 800.273.8255 (TALK)
• TrevorLifeline is a mental health crisis support system for the LGBTQ community; call 866.488.7386 or text “START” to 678678
• HTCs with a 24/7 healthcare provider can offer immediate referral to a counselor if you are experiencing an acute crisis
Organizations
• Depression and Bipolar Support Alliance offers free support groups around the country
• National Alliance on Mental Illness provides support groups for family members of loved ones struggling with mental health problems
• Mental Health First Aid has a search tool so people can find a course in their area to learn to identify and assist people struggling with mental health issues