Climbing the Seven Summits has been the dream of many adventurers. To date only 231 people in history have completed the Seven Summit list. As of March 2015, I have summited five … with only Mt. Vinson (Antarctica) and Mt. Everest remaining. Completing the Seven Summits is already an overwhelming endeavor; now imagine accomplishing this with a bleed[ing] disorder. I am excited to take on this task and educate others on hemophilia and overcome my own personal obstacles in the process! - Chris Bombardier
Chris Bombardier is a 29-year-old with severe factor IX deficiency. He tells me he was not always so self-assured and inspired as his Seven Summits blog suggests. He has a phobia of needles and infusing, which he was only able to overcome because of his desire to play baseball in high school. He recalls feeling frustration and anger and, when he was younger, never really knowing why. After college, when his baseball career ended, Chris felt lost. He stopped infusing, started drinking, and was not active in the community. Chris was severely depressed. He did not know how to reach out to his hemophilia treatment center (HTC). When the HTC social worker asked, “How’s it going?” in clinic, Chris would give the socially acceptable answer, “Fine.”
Chris says he has always felt different, missing extra time from baseball because of his hemophilia. This spring he had a bleed that stalled his training for climbing Mt. Rainier. Chris knows how lucky he is to have access to factor, good medical care, and loving family and friends. But he continues to cope with feeling angry about having to overcome the pain and setbacks associated with living with hemophilia. He’s not alone.
Depression is a normal part of the range of human experience. We are drawn together as a species by our need to be engaged and connected with each other, and in the activities that make up our daily living. We would not have cohesive communities, families, and work environments if we did not feel deeply about each other and what we are doing. Because of this, when we feel a loss, we appropriately experience difficult emotional reactions like depression.
According to the Diagnostic and Statistical Manual of Mental Disorders (DSMV), sad feelings become a problem when they last longer than two months after a major loss, continue for at least two weeks, and cause problems in important areas of your life. For some, everything may look good from the outside, but it takes a monumental effort to keep up appearances and stay functional. Fortunately, depression almost always gets better with proper focused attention.
Unfortunately, depression is an illness that still carries with it a negative stigma for many people. Our cultural norms and societal values often leave little room for depression. Success means “living happily ever after.” Depression is associated with immature coping skills, exemplified in common phrases like “Big boys don’t cry” and “Put your big-girl pants on and get over it.”
Depression strikes people of all ages, races, creeds, educational levels, and socioeconomic levels. The symptoms that depressed people experience are affected by the traits they inherit, and what they have learned about how to cope with stress. Stressful, long-term, difficult life challenges such as financial problems, physical limitations, pain, health issues, access to adequate healthcare, and the high cost of medications can all contribute to the emotional burden of stress. Depression is one of our most common problems. It is also a complex issue.
The Hemophilia Experiences, Results and Opportunities (HERO) study, conducted by the HERO Advisory Board,1 found that 57% of parents of children with hemophilia feel the need for psychosocial support in coping with their child’s hemophilia. In 2007 the Arizona Hemophilia and Thrombosis Center (AzHTC), where I work, found that a little more than 1 in 3 men with hemophilia experienced depression. We discovered that people with hemophilia who also reported a lack of social support or problems with unemployment were more likely to be depressed. Sadly, we also found that almost a quarter of all the people surveyed said they were without social support and almost half were unemployed.
The HERO study found that poor mental health puts a burden on relationships and employment. Imagine the downward spiral generated by being depressed and feeling isolated. Of the 57% of parents who reported feeling the need for psychosocial support in the HERO study, 33% did not actually seek the help they needed. This is what makes depression so debilitating. As early as 2004, the Cleveland Clinic Health System reported that as many as 1 in 4 men with chronic illness are suffering from symptoms of depression. In the general population the same year, 1 in 25 men in the US suffered from symptoms of depression. That means that living with a chronic illness increases the rate of depression by 6 to 8 times that of the general population.
Unfortunately, experiencing depression affects the way a person feels and thinks about his or her health. Depression can increase perception of pain. Chronic depression can also cause gastrointestinal problems, change immune function, raise cholesterol, and contribute to heart disease. The ENIGMA study, authored at the Brain and Mind Research Institute in Australia, shows that depression promotes changes in the brain that can affect memory. Depression can contribute to changes in ability to focus and concentrate. It’s not surprising that people suffering from depression often feel in desperate need of immediate relief.
Depression is associated with an increase in risky behaviors like drug and alcohol abuse, poor adherence to medical treatments, and decreases in quality of life. The HERO study found that mental health can be an underlying force in choosing treatment regimes. At the AzHTC, we found that 2 in 3 of the men surveyed reported difficulties in their normal activities due to their depressive symptoms. Choices in hemophilia care treatment plans, as well as the ability to follow through with those plans, can be influenced by depression.
It is universally accepted within the bleeding disorder community that patients with hemophilia enjoy better health and quality of life when they engage in prophylactic treatment with factor. Straying from prescribed treatments is damaging and, at worst, life threatening. Unfortunately, factor replacement therapy often requires a demanding regimen of frequent intravenous administrations, usually 1 to 3 times per week. Taking factor as prescribed can be difficult because of the physical burden of venipuncture or central venous access, inconvenience, complications, fear of the risks of infections or inhibitors, and cost. Sometimes the emotional and practical toll of hemophilia care on patients or their parents can promote misunderstanding about when to treat or call a provider. For some, the experience can be so overwhelming that they stop paying attention and deny the negative consequences of failing to treat as prescribed. Adolescents are especially prone to feeling a lack of commitment to treat. Many are afraid of exposing their hemophilia diagnosis to family or friends, or in a public situation. It’s not uncommon for people to limit their activities because they will take their medication only at home. Symptoms of depression and anxiety can further reduce one’s ability to take proper care.
Fortunately, it is becoming widely accepted that mental health and the impact of living with a chronic illness are inseparably linked. Mental health screening and care are increasingly available in HTCs. If we pay attention to depression, we can reduce the severity of the symptoms and improve quality of life.
Eight basic categories of symptoms are part of a clinical assessment for depression: sleep, interest, guilt, energy, concentration, appetite, lethargy or restlessness, and thoughts of suicide. All eight categories are broad in scope, and are evaluated based on whether a person experiences significant changes from normal behavior patterns.
- Problems with sleep, such as having a hard time staying awake in the evening, waking up in the morning, or extra daytime napping; or, conversely, having trouble falling asleep, staying asleep at night, or waking too early in the morning.
- A recent loss of interest in doing things that would normally be pleasurable, such as hobbies, friends, sex, exercise, or work.
- A tendency to focus on unrealistic negative thoughts, feel guilty or preoccupied with past failings, or misinterpret trivial day-to-day events.
- A disabling experience of tiredness or fatigue without physical exertion, such as being exhausted for no clear reason.
- A lack of ability to concentrate or make decisions; a tendency to become easily distracted or have problems with memory.
- Significant changes in appetite, resulting in weight changes that require forced eating or constantly craving food.
- Problems with slowed speech, thinking, or body movements; or, conversely, rapid speech, rapid changes in the content of a conversation, an inability to sit still, pacing, hand-wringing, pulling or rubbing of skin or clothing.
- Thoughts of death or suicide, thinking about giving up, “ending the pain,” or a belief that “others would be better off without me.”
According to the Suicide Intervention Handbook,2 most suicidal people are unsure about dying and are desperately looking for a way out. Talking about suicide does not create or increase the risk; it reduces the risk. Often, nonfatal harmful behaviors such as unsuccessful suicide attempts, taking pills, cutting, and other high-risk activities are an invitation for others to help. Most people communicate how they are feeling by direct statement, physical signs (cutting themselves, losing weight, isolating), or emotional reactions (irritability, moodiness, sadness). Everyone thinking about suicide should be taken seriously. Feelings or events over a prolonged period of time are what typically contribute to a suicide attempt.
The burden of raising a child with hemophilia can take a toll. According to the HERO study, parents may be coping with their own feelings of guilt, shock, disappointment, fear, or anxiety. Raising a child with hemophilia can place stress on parents’ sense of self-esteem and personal relationships. This can lead to anger, resentment, guilt, and sometimes overcompensation in parenting style.
Children with hemophilia have the burden of coping with normal developmental milestones as well as frequent medical procedures and complications. Medical issues range from serious, requiring hospitalization, to routine, requiring frequent venipuncture. Medical treatment may be traumatizing, impact children’s social lives, or limit their ability to fully participate in family, school, and community activities. Adolescence is complicated by the stress associated with developmental milestones in conjunction with changing hormones and great pressures to conform. Teens who are different at this stage can be bullied, feel ostracized, or have a sense of not being fully in control. Teens are trying to individuate from their parents. Some adolescents may have a “woe is me” attitude because of their bleeding disorder, feeling hopeless or overly cautious. Others may overcompensate for the restrictions imposed by living with a bleeding disorder, and may take unnecessary risks. The stress associated with growing up with hemophilia and raising a child with hemophilia increases the likelihood of symptoms of depression.
Recognizing depression in children presents unique challenges. Zero to Three, a national organization dedicated to the mental well-being of children, emphasizes that children often do not have the verbal or cognitive skills to describe their experience. This leaves the burden of awareness on their primary caretakers. Changes in established patterns of behavior—especially persistent depressed mood or irritability—are clues to inspire questioning about whether depression is at play. As any parent knows, this is easier said than done. In infants and toddlers, we look for marked changes in sleeping or eating habits, and feelings of anger, irritability, or restlessness. In older children, we look for changes in eating or sleeping habits; depressed or irritable mood; restlessness, lethargy, or fatigue; feeling sad, hopeless, worthless, or guilty; having little interest in doing things that are normally fun; trouble concentrating or problem solving; trouble responding to teachers or caregivers; increased irresponsible or defiant behavior; or thoughts of death or suicide. Usually, attentive parents know when something is up, and it doesn’t hurt to err on the side of caution and check with your doctor, HTC, or mental healthcare provider.
Assessing depression is a complex diagnostic process that requires professional attention to medical issues, a full review of symptoms, collecting information from all possible sources, and getting a detailed medical and social history. Visit your HTC team if you suspect depression in yourself or a loved one.
When assessing medical issues, it is vital to consider risk factors such as medications that can cause depressive symptoms and medical conditions known to cause depression. In the current healthcare climate, it can be difficult for a provider to devote time to a full review of symptoms. In 2002 Dr. Ronald Remick, at St. Paul’s Hospital in Vancouver, BC,3 identified four common errors in recognizing depression. The first results from underdiagnosing depression because of incomplete assessments. The second results from a failure to collect information from family, friends, and caretakers, relying solely on the patient, even though the patient’s view may be skewed because of depressive symptoms. Third, a provider may minimize a patient’s depression because of the existence of other major health problems. This sounds something like, “Of course you’re depressed; anyone with your disability would be depressed.” Fourth, depression can be overdiagnosed when a provider bases the diagnosis on a “depressed mood” without a complete screening. It’s important to learn how to be a smart consumer when it comes to depression care, increasing your chance for more effective care.
The Patient Protection and Affordable Care Act (ACA), enacted in 2013, has helped people with chronic illness by barring insurance coverage exclusions due to preexisting conditions. The ACA also expanded care to those in poverty. In 2014 many plans were required to cover 10 essential health benefits (EHB). Mental healthcare is among the EHB. Specifically, many plans require screening and assessing for depression, alcohol misuse, tobacco use, and domestic violence. Further, healthcare systems are being tasked with treating mental health similarly to physical health. Mental health assessment may be covered in your plan. Please don’t let the fear of not having coverage keep you from asking your HTC for help.
If you suspect that you or a loved one may be depressed, first of all, talk about it. Talk to your doctor, family, friends, therapist, or clergy. Engage in support groups at your HTC, spiritual community, or neighborhood center. Get screened by a mental healthcare professional. Educate yourself: read books about depression, or search the Internet for professional articles from reliable sources. The National Institute of Mental Health (NIMH)4 has many resources. Learn to advocate for yourself and your loved ones.
Overcome the stigma of depression. You have many choices when coping with depression, including making changes to your lifestyle, engaging in psychotherapy, or trying medication; even doing nothing is a choice. Successful treatment usually includes a combination of psychotherapy, medication, and lifestyle changes. However, treating depression is a highly individual process.
Unfortunately, when you’re depressed, you don’t feel like doing anything or talking to anyone. We react to life events based on automatic, sometimes subconscious interpretations. At times these automatic thoughts can promote depression, heartache, even physical pain in the present. Automatic thoughts can lead to a passive interpersonal style, where we go along with anything, whether we like it or not, to avoid conflict at all costs. Maybe as children, we learned to be very passive because we got a treat for being “such a good kid,” but as adults, we’re struggling with our jobs because we are not assertive enough. Sometimes automatic thoughts lead to an extremely aggressive interpersonal style where we push people to do or think as we do in order to control outcomes. Habits like this can reduce our success at home, work, and—especially important for those with a bleeding disorder—at the HTC. Learned habits can contribute to poor listening styles such as “spacing out,” “pretend” listening, “selective” listening, inattention, or being self-centered. All of these strategies, if left unchecked, can affect our ability to maintain healthy relationships or be productive within our family, community, and workplace.
One of the most effective strategies to combat depression is to engage in a pleasurable activity. But when you’re depressed, this strategy is often one of the first things to go. When you’re trying to reclaim your life from depression, you may have to “fake it ’til you make it.” The bottom line is to begin engaging in activities that, over time, will make you feel good. These activities can include spending time in nature, eating well, exercising, pursuing spiritual goals, increasing creativity, getting involved in your community, and improving your sleeping patterns. The goal of these activities is to have fun, feed your spirit, relax, breathe deeply, stay connected, lighten up, and help others. Remember that change usually takes time. Give yourself time, be patient, be compassionate. Treat yourself as you would your best friend.
If you need to improve your sleep, try an improved “sleep hygiene” routine. Cognitive behavioral therapists and physicians may be skilled in coaching you through modifying your sleep hygiene. Healthy sleep hygiene includes having a regular bedtime and waking time; “smart” napping and fighting after-dinner drowsiness; increasing your daytime exposure to natural light; boosting melatonin at night by making the room dark (no phone, TV, computer, e-reader); keeping your bedroom quiet, cool, and comfortable; refraining from big late-night meals; avoiding alcohol before bed; eliminating caffeine 4 to 6 hours before bedtime; and refraining from smoking.
Make relaxing your goal, not sleep, and try to postpone worrying or brainstorming. See your doctor if you experience persistent problems such as daytime sleepiness or fatigue, loud snoring, difficulty falling or staying asleep, frequent headaches, crawling sensations in your legs or arms at night, inability to move while falling asleep, physically acting out dreams during sleep, or falling asleep at inappropriate times.
Whether to treat your symptoms with an antidepressant medication is a topic about which many people are passionate. There are many reasons some folks don’t believe in taking medication. Other folks just want a pill so it can make them feel better. Healing is a process in which we need to stay engaged and open-minded. It’s fine to try the path of least resistance, but if that doesn’t work, be willing to reassess and make adjustments. Be an active, open-minded partner in your recovery from depression. There are myriad antidepressants from which your healthcare provider can choose to tailor a medication protocol that works for you. Proper follow-up after an antidepressant is started is to see your healthcare provider after two weeks, four weeks, and then monthly until symptoms are improved and side effects are minimized. Then, regular follow-up annually.
Sometimes, after symptoms have been relieved for an extended period, you and your healthcare provider may choose to evaluate whether you can safely discontinue your antidepressant and try taking a “drug holiday.” Sometimes your symptoms can return, and you and your provider may choose to change your medication or dose. As with any medication, it’s important to have a responsive, attentive healthcare provider and to promptly communicate all medication problems and changes.
People sometimes struggle with choosing whether to treat depression by engaging in psychotherapy. Some folks are adverse to psychotherapy because they have had, or know someone who has had, a negative experience with it. Some don’t believe psychotherapy will help, they don’t want to talk, they’re too busy, or they are too ashamed.
There are many types of psychotherapy. How to choose? Again, talk to people. You will probably be surprised to learn that someone you know has seen a therapist they’ve liked. Get recommendations from people you respect. Interview several therapists to find someone you think may be a good fit and you can afford. After you have selected a therapist, show up, and, when it gets rough—which it may—don’t quit.
Reaching out to people with depression is a top priority. The AzHTC study found that having social support decreases the risk for depression by 80% and being employed decreases the risk by 84%. Fortunately, the bleeding disorder community is a well-organized network of support organizations that promote social interaction, education, and self-reliance. Many HTCs currently implement effective screening, education, and interventions for depression care and management. Regionally and nationally, there is a focus on improving comprehensive care and expanding psychosocial support. The psychosocial program at the AzHTC in Tucson includes screening all patients for depression and anxiety at every comprehensive clinic visit. Our screening includes two questionnaires and a short clinical interview, scheduling a follow-up appointment for people who need and want further help, and providing education regarding treatment options both in and out of the HTC.
Many people with hemophilia have said summer camp changed their lives, giving them a supportive peer group and a sense of self-worth—much needed by young people with a bleeding disorder. One mother reported her son’s perspective was changed by being a camper, and later a counselor, at Dream Street (a camp for kids with serious medical conditions, mostly cancer). Each year a few kids failed to return to camp because they had died. Rather than feel sorry for himself, her son felt lucky that he “only had hemophilia.” Volunteering at summer camp also contributes to feelings of self-worth. Service to others is a great way to enlarge our perspective and possibly alleviate feelings of depression.
Here’s some good advice from patients who participated in the HERO study: live life as normally as possible, keep active, get involved in the community, and educate those around you.
Our ability to cope with stress, anxiety, and depression starts with acknowledging and accepting our experience in each moment. More advice from patients who participated in the HERO study: enjoy life, communicate openly, “embrace” hemophilia, and “get into” treatment.
Parents have the enormous responsibility of raising healthy children. This is sometimes compounded by the existence of a chronic illness like hemophilia. They have the equally enormous responsibility of letting go of these same children—and helping them achieve successful independence. Children cope with developing into productive members in their families, schools and communities, and, finally, in the larger society. We all have to learn how to productively negotiate emotionally and socially from the time of infancy into adulthood. Learning how to transition through life stages and within varied roles is a skill that constantly needs to be honed. We don’t always get it right, but with an open mind, we can always learn. Developing the skills necessary to make conscious choices and strategizing to make desired changes in our lives is a process that takes a willingness to tolerate hard times and emotional upheavals, as well as awareness and practice.
Depression care is a team effort with the individual as the leader. Get educated about depression. Get screened. Healthcare providers need to improve screening, follow up with findings and medication prescriptions, and collaborate with patients and other healthcare providers. Patients need to show up and challenge themselves to do the work. Remember, change can be difficult. Participate in proper treatment and don’t give up until you get it right.
Balancing recovery and pushing himself to reach his goals requires Chris Bombardier to process a broad range of positive and negative emotions. He attributes his initial and sustained recovery from depression to his wife’s support, the resources at his HTC, and finding his passion for the outdoors. He finds his time in nature “good for his soul.” He engaged in psychotherapy, became active in the hemophilia community, and challenged himself to set and achieve goals.
Chris hopes that other people with hemophilia will find relief from depression by talking about their experiences and finding the strength to acknowledge their condition and move on. Chris has learned that it’s okay to struggle with his feelings of anger, frustration, and guilt. With proper self-care, these feelings are no longer overwhelming.
Maria Iannone is a licensed professional counselor at the Arizona Hemophilia and Thrombosis Center (AzHTC) in Tucson, Arizona, where she has worked for nine years. She treats adults, children, and families. She has developed a comprehensive mental healthcare management program for patients with hemophilia at the AzHTC and engages in psychosocial research projects. She is the lead author of the peer-reviewed article “The Prevalence of Depression in Adults with Hemophilia,” and she wrote the nationally disseminated NHF Collaborating in Care module on depression and anxiety. Maria completed her graduate study in counseling psychology, an internship at the Blake Foundation in which she specialized in the assessment and treatment of children and the use of parent/child psychotherapy, and an internship in the Psychosocial Oncology Program at the University of Arizona Cancer Center, in which she specialized in assessment and treatment of breast cancer survivors. Maria draws from both her clinical experience and previous biomedical research experience.