Man with eyes closed holding his neck

Emotional Protection

Chronic conditions require attention to mental health
Author: Nancy Mann Jackson

Actor and comedian Robin Williams’ suicide in August helped shine a much-needed spotlight on the prevalence of depression and other mental health issues in the US and what can be done to address them.

While depression, anxiety and other mental health issues are relatively common in the general population, they are even more prevalent in people with chronic health issues. A study conducted by researchers at the Arizona Hemophilia and Thrombosis Center (HTC) in Tucson in 2009 showed that 37% of men with hemophilia experience depression, compared with about 4% of men in the general population, says Maria Iannone, a licensed associate counselor at the Arizona HTC and the study’s lead author.

“Our community has an increased prevalence of depression and anxiety,” says James Hammel, MD, a psychiatrist at Seattle’s Virginia Mason Medical Center, who serves on the board of the National Hemophilia Foundation. “But we have a lot of hematology-based care providers around us, which should give us greater access to the overall healthcare system.” Anyone whose anxiety or depression impairs normal daily function should tell a healthcare provider and receive help, he says.

The mental health-chronic disease connection

Everyone experiences stress at times, and sometimes it can lead to anxiety or depression. But people with chronic diseases often deal with constant concerns that others do not have. Simply making repeat visits to an array of doctors, and having multiple medical tests and treatments from childhood into adulthood, causes additional stress for people with bleeding disorders, according to Cathy Buranahirun, PsyD, pediatric psychologist and neuropsychologist at the HTC at Children’s Hospital Los Angeles.

“We do have people who are debilitated by their hemophilia,” Iannone says. For instance, internal bleeding can lead to joint pain and arthritis, nerve pain, infection and eventually joint surgery. Living with chronic pain or persistent medical problems can cause people to feel overwhelmed by the physical difficulties of their lives.

Although people with bleeding disorders may have more ongoing stressors, the mental health challenges accompanying them can be conquered. “Unlike a bleeding disorder, a mental condition doesn’t have to be chronic,” Hammel says. “If you’re really anxious or depressed, a bleeding disorder doesn’t do well. That’s even more incentive to get it treated.”

Finding help

Two people talking
Alexander Raths/Thinkstock

When people feel depressed or anxious, they often believe they are alone and that no one else understands them. Those suffering may fear others’ opinions if they share their feelings, or they may believe there is no relief from the pain. But that simply isn’t true. “The stigma against mental illness is rapidly going away,” Hammel says. “Particularly after the tragedy of Robin Williams, we recognize that depression and anxiety are medical illnesses no different from hemophilia and other bleeding disorders.”

When feelings of sadness interfere with normal life, they should be taken seriously, Hammel says. For instance, if they prevent you from going to work or school or from participating in activities you enjoy, it is time to seek advice from a medical professional. 

Parents of a child with a bleeding disorder should watch for changes in their child’s mood, behavior, grades, friendships, appetite or sleep, says Erin Hawks, PhD, a psychology fellow at the University of Oklahoma Health Sciences Center in Oklahoma City. Any of these symptoms can be signs of anxiety, worry or depression.

“When the individual hears from their significant other, family or friends that they are disengaged, withdrawn, unfocused, cranky or irritable, that’s often when individuals start to realize there’s a problem and that it needs to be addressed,” says Mina Nguyen, PsyD, psychologist at the Oregon HTC and assistant clinical professor of pediatrics at Oregon Health & Science University in Portland.

When diagnosing clinical depression, mental health practitioners consider duration and persistence of symptoms, Nguyen says. If a person’s feelings of depression or anxiety last all day or continue for months, treatment is likely needed. (See “Detecting Depression” sidebar on p. 40 for a detailed list of the most common symptoms of clinical depression.)

If you or a family member is experiencing signs of depression or other mental health concerns, let healthcare professionals determine whether the symptoms are chronic. “Even if it’s transient sadness or stress, even if it’s not diagnosable, it can still affect how well you take care of yourself or your child,” Buranahirun says. “If there are any concerns, it would be a good idea to bring it up at your HTC appointment. Just open it up for discussion.”

Although it is becoming increasingly common for HTCs to have mental health professionals on site, all members of the healthcare team can assist with mental health concerns. Share those concerns with a healthcare provider you feel comfortable with, whether it’s a social worker, physician, nurse or therapist, says Buranahirun. Any HTC professional can help guide patients or family members through the proper channels to get the help they need.

But give yourself time to find someone you have rapport with. You may need to try more than one provider to find the right fit. It’s important to find someone willing to closely follow you until you are experiencing some relief from your symptoms, Iannone says.

Steps to healing

Discussing the changes in mood or feelings you are experiencing is the first step to making things better. Although you may start the conversation with your HTC doctor or nurse, he or she may refer you to your social worker, a psychologist or a counselor. “Our MDs and nurses are usually swamped with patient care and are not trained as mental health practitioners,” Nguyen says.

Boy with head in hand, thinking

Even though mental health concerns are fairly common for people with bleeding disorders, they don’t have to be a fact of life. And forging a relationship with a mental health professional is often a vital step in moving forward. “Suffering from depression doesn’t mean someone is deficient in any way,” Iannone says. “Often, people can find relief when they develop a good relationship with a healthcare provider, clergy member or family member who can help lead them to a new status quo.”

Medication is often part of the successful treatment of depression, anxiety and other mental health issues. Finding the right medication for each person can take time, patience and a good working relationship with a healthcare provider. “Treating depression is always a process,” Iannone says. “Some folks hope they can resolve their depression with medication only. However, just taking a pill rarely works. Getting better usually also requires an educational process and lifestyle changes.”

Many HTCs are working to prevent mental health concerns before they become a problem. For instance, Iannone and Buranahirun screen all patients for symptoms of depression, anxiety or similar issues. Buranahirun often provides brief, intermittent psychology consultation. “It can be very effective to catch it early, preventing the need for later work,” she says.

Dealing with depression and anxiety can come in the form of social outings and networking groups, such as the Blood Brotherhood, a national outreach program for adult men diagnosed and living with bleeding disorders. At the Oregon HTC, mental health professionals regularly try to pair patients at risk for depression or other mental health issues with others of similar age or situation, Nguyen says. Building relationships with those who understand them can help people overcome persistent negative feelings.

In addition, many HTCs refer patients to local family support groups or family camps. Others sponsor camps for children with bleeding disorders or annual retreats for adults with hemophilia. “People who are depressed are more likely to be unemployed and to not feel socially connected,” Iannone says. “Fortunately, the bleeding disorders community provides many opportunities through retreats, support activities and programming to help people feel more connected (and) have a place to process their experience.”

Finally, people with bleeding disorders and their family members should continually closely monitor their own moods and be aware of changes. “Patients can take some responsibility to keep themselves mentally healthy,” Nguyen says. “Build a support network and communicate with your providers so you can recognize and work on issues, rather than waiting until the condition is severe.”