Published: Lifelines for Health Fall 2019

By: Anna Maria Bell, LICSW, LCSW-C, LISW

Having a chronic medical diagnosis, can be extremely challenging. Along with those challenges, caregivers and those managing the diagnosis often face periods of isolation, depression, and anxiety. Because of this fact, taking care of your mental health becomes as essential, as taking care of your physical health.

Mental health encompasses many things including emotional, psychological, and social well-being. Your mental health will affect how you handle stress, relate to others and make choices. Mental health may have
a biological factor or be caused by life experiences including trauma and abuse. As we explore the literature surrounding chronic conditions and mental health, namely depression and anxiety, we see a substantial cause and effect scenario. Some research suggests that due to constant issues with managing pain, the cost, as well as the stress and worry of managing the condition causes mental health complications. Other research asserts that there is an increased likelihood for a chronic condition to develop and manifest, if a person is diagnosed with mental health concerns as a result of not taking care of one’s medical needs including non-compliance with medication, attending doctor’s appointments and following medical recommendations.

Living with a chronic condition can become all consuming. Taking the time to manage multiple appointments, infusion regimens (often including their own, their children or loved ones), managing the pain and subsequent doctor’s appointments involves many hours of planning and juggling. Because of this fact, paying attention to the signs of depression and anxiety often take a back burner to day-to-day responsibilities, leaving some undiagnosed and most definitely untreated.

Take for example the chronic condition of hemophilia. Because of the genetic predisposition for it, caregivers have little to no adjustment time before their role as caregiver begins. (According to Schwartz, Powell & Eldar-Lissai, 2017), since people are born with hemophilia, family members are initiated into the caregiving role as soon as the family becomes aware of the diagnosis. Because of this, caregivers need to equip themselves to be able to manage multiple co- morbidities, while also taking care of themselves mentally because caregiving is physically, emotionally, and financially demanding. (Miravitlles, Pena- Longobardo, Oliva-Moreno & Hidalgo-Vega, 2015).

Depression and Anxiety

Depression and anxiety present themselves in different ways. Coping with a disorder causes the person to have thought processes that, if gone untreated, can lead to mental health complications. Some of those thought processes may include:

• What did I do to deserve this (why me?)

• I am not equipped enough to handle this

• I feel unfulfilled due to this diagnosis

• My body is flawed

• Why is my life so complicated?

Without proper coping mechanisms these thoughts can manifest into the symptomatology of depression and anxiety.

Anxiety is the way people respond to certain objects, stimuli or situations. These responses often involve feeling dread and fear. With a chronic condition, this fear and dread can often be centered around effect management, including quality of life issues as well as life expectancy.

With the genetic component of some chronic conditions, fear and dread is often fueled by familial examples of family members living, coping and managing it. If these “examples” have not been positive in nature or have resulted in failing health, issues with pain management, increase in bleeding episodes, multiple hospitalizations, multiple surgeries, and an overall decrease in quality of life, then the perspective on living with the condition can cause fear and dread leading to anxiety symptoms.

Depression is the persistent feeling of sadness or loss. It often manifests itself with a wide range of behavioral and physical symptoms including thoughts of suicide. These symptoms can be broken up into several categories including mood, behavioral, sleep, physical, and cognitive symptoms.

In persons managing a chronic condition, the feelings of loss of control over their own body, along with physical complications from managing it can often result in feelings of isolation, agitation, apathy, hopelessness thereby presenting as depression. As the focus of managing the disorder takes precedence, it often prevents the affected individual or their caregivers, from seeking out treatment, for depression and anxiety.

A team led by researchers at the Munson Medical Center, and supported by Pfizer, conducted a survey to better understand the incidence and impact of anxiety and depression among hemophilia patients. The study recruited 200 participants, of whom 80.5% had hemophilia type A and 19.5% had hemophilia type B, between 2013 and 2014 at national or state conferences for people with hemophilia in the United States. Among the participants, 68% had hemophilia classified as severe. The survey revealed that 186 (93%), of the participants experienced symptoms consistent with depression, and 184 (92%), had anxiety.

Among these persons, 52 (28%), reported moderate-to- severe depression, while 23 (14%) had moderate-to-severe anxiety. What is most significant about this study is that more than half of the respondents indicated no history of “diagnosed” depression. This adds to the argument that this population, although exhibiting symptoms, often moderate to severe, are still going undiagnosed and thereby untreated. With this knowledge the researchers suggest that patients and caregivers managing chronic conditions, in this case Hemophilia, should undergo routine screenings at their HTC’s or doctor’s appointments. Most HTC’s have social worker’s on staff who are available and licensed to complete these assessments. As medical models
are expanding their focus, including the “whole person” philosophy of mind/body wellness, hopefully the stigma surrounding mental health diagnosis can be removed and these screenings will become common practice.

Complications of Pain Management

More than 25 million U.S. adults have some level of daily pain, and 10.5 million have considerable pain every day. Managing hemophilia often involves treating pain by utilizing medication. Often these medications are prescribed as a daily course of treatment. For more than 25 years, opioids for the treatment of acute pain have been strongly encouraged, in the past 2 decades, the treatment of chronic pain using long-term opioid therapy has become more common. Although prescribed with intentions of increased quality of life and freedom from constant pain, this regimen of pain management has resulted in unintended consequences. The dependency on these medications have caused addiction rates in this population to skyrocket as well as all the complicating factors associated with addiction. These include financial hardships, family conflicts, an increase in rates of depression and sadly an increase in suicidal rates.

The correlation between addiction and mental health has been researched and proven over the years. As the communities of people who suffer from chronic conditions battle to find ways to live a “normal” life as pain free as possible, it is important to closely monitor dependency and to also seek out treatment from certified addiction counselors who help to develop alternative methods and strategies to managing pain, free from addiction. Some emotional/behavioral symptoms of drug dependency include:

• Loss of control over the amount and frequency of use

• Craving and compulsive using

• Continued use in the face of adverse consequences

• Missing work/school

• Isolating/secretive about activities

• Relationship/marital problems

• Irritability/argumentative

• Defensiveness

• Inability to deal with stress

• Confusion

• Blaming others for their problems

Survivor’s Guilt

Survivor guilt is a mental condition that occurs when a person believes they have done something wrong by
surviving a traumatic event when others did not, often feeling self-guilt. In the hemophilia community, survivor’s guilt is often not spoken about. At most national conferences they honor those who have passed on from complications associated with hemophilia, at “Remembrance Services”. These services are well attended, full of amazing and beautiful stories of love, sacrifice, and ultimate loss of loved ones. Some of the stories are about fathers, sons, moms, brothers and sisters. Then there are those stories of 5 uncles and a dad, 6 siblings and a father, whole generations of families who have fought the valiant fight and lost the battle with disease. Then you hear the remaining family discuss, or “why not me, when I lost my dad and all my uncles?” These are poignant examples of survivor’s guilt. This guilt adds to the symptoms of depression and anxiety. Often resulting in self-loathing, increased sadness and feelings of isolation.

As those suffering with chronic conditions deal with this survivor’s guilt, the desire to attach and form relationships often is compromised due to the feeling of inevitable loss or that they may be next so why get close to anyone. Survivor’s guilt may also induce non-compliance with treatment regimens with a subconscious desire to “be with the lost loved one” or “I am going to be next so why not speed up the process”. These feelings may appear extreme but are realistic to the person who is experiencing them. Survivor’s often have both depression (sadness, apathy) while also experiencing anxiety (fear and dread), at the same time. As a survivor who is living with a chronic disorder, managing these feelings through therapeutic intervention is paramount.

Suicide

Suffering debilitating pain every day may be so unbearable that some decide to take their own lives. In a study, led by Dr. Emiko Petrosky from the U.S. National Center for Injury Prevention and Control, in 8.8 percent of suicides in 2014, there was some type of history of chronic pain. This was a significant increase from previous studies in 2003 which only indicated a 4.7 percent history of chronic pain. Among suicide victims with chronic pain where toxicology results were available, opioids were much more likely to be present at the time of death than in those without pain. In addition, if a suicide note was present, more than two-thirds mentioned a pain condition as well as long suffering from the pain as a direct contributor to the suicide crises.

These startling statistics highlight the importance of mental health intervention for anyone attempting to manage a chronic condition. It also highlights the need to improve pain treatment, not only for the direct effect on management but also as a “method to raise hope” in persons coping with chronic pain due to a chronic condition. For those who may have or have had thoughts of suicide, it is imperative that you seek out intervention from someone who is licensed to provide services in crises situations. Some of the warning signs or things to look out for include:

• Inability to perform daily tasks like bathing, brushing teeth, brushing hair, changing clothes
• Rapid mood swings, increased energy level, inability to stay still, pacing
• Suddenly depressed, withdrawn; suddenly happy or calm after period of depression
• Increased agitation, verbal threats, violent, out-of-control behavior, destroys property
• Isolation from school, work, family, friends
• Paranoia
• Increased or new substance usage
• Constant sleeping or Insomnia

Common warning signs of suicide include:

• Giving away personal possessions

• Talking as if they’re saying goodbye or going away forever

• Taking steps to tie up loose ends, like organizing personal papers or paying off debts

• Stockpiling pills or obtaining a weapon

• Preoccupation with death

• Sudden cheerfulness or calm after a period of despondency

What to do if someone is in crisis/at risk of suicide:

If safe, keep them talking. Ask things that require more than a yes and no response like:

• Tell me what emotions you are feeling?

• What happened to make you feel this way?

• What can I do to help you right now?

• “Let’s go get something to eat or spend the day together.”

  (Diverting their attention is extremely beneficial.) Remember, asking questions without judgement is essential. Here are some things to ask:

• Ask them if they have a therapist or counselor they would like to reach out to.

• Tell them you would be happy to assist them to get to the hospital or crisis clinic and are willing to stay during the assessment process (this is a scary step for some people so having someone there with them is extremely beneficial)

• Ask them if they are thinking about completing suicide. An example of what to say could be: “Based on what you’ve shared with me, I’m wondering if you’re thinking about suicide?” If they answer yes, find out more details and ask them if they have a plan such as, “Do you have a plan for how you would do it?”

Never say things like:

• “We all go through tough times like these. You’ll be fine.”

• “It’s all in your head. Just snap out of it.”

• “You think you have problems, well look what happened to me.”

• “Get some sleep and things will look differently tomorrow.”

• “Grow up and stop feeling sorry for yourself.”

What can I do if I recognize my Family or Friends have Mental Health Challenges?

• Remember only 44% of adults with diagnosable mental health problems and less than 20% of children and adolescents receive needed treatment. Do something!!

• Friends and family can be important influences to help someone get the treatment and services they need.

• Treat people with mental health diagnoses with respect, compassion, and empathy

• Don’t define them by their diagnosis or use labels such as "crazy"

• Express your concern and support

• Remind your friend or family member that help is available and that mental health problems can be treated

• Ask questions, listen to ideas, and be responsive when the topic of mental health comes up

How to start a conversation with Adults about Mental Health

• Can you tell me more about what is happening? How you are feeling?

• Can we talk about what you are experiencing? If not, who are you comfortable talking to?

• Have you had feelings like this in the past or are these new feelings? When did you notice the change?

• I’m here to listen. How can I help you feel better?

• I’m worried about your safety. Can you tell me if you have thoughts about harming yourself or others?

How to start a conversation with children or adolescents about Mental Health

• Communicate in a straightforward manner. Don’t beat around the bush.

• Speak at a level that is appropriate to a child or adolescent’s age and developmental level. The developmental level is the most important.

• Discuss the topic when your child feels safe and comfortable

• Watch for reactions during the discussion and slow down or back up if your child becomes confused or looks upset (nonverbal cues are important)

• Listen openly and let your child tell you about his or her feelings and worries

Treatment Options

Seeking treatment through therapeutic intervention should not be an after-thought, but viewed as a holistic approach to wellness. It should not be a surprise or something you, “just get to when I have time”, especially if you are living with a chronic condition. Developing coping strategies and having a safe and non-judgmental place to share the emotions, the loss, the sorrows of managing and having a chronic condition, is extremely beneficial. It is important to remember that therapy is not a “one size fits all” but instead in this day-and-time, there are many different modalities and options for treatment that are available for you to consider. If the idea of “talk” therapy does not appeal to you, why not try art therapy or music therapy? The most important thing to remember is that seeking treatment should not be stigmatized but instead viewed as a way to live a healthier, more productive, and fulfilled life. Here are some things to consider when seeking therapy:

• Therapy is not a “one size fits all”.

• If one therapist just doesn’t feel right and you are unable to develop a trusting relationship, don’t be discouraged, try someone else.

• If Traditional “talk” Therapy is not comfortable there are plenty of therapy modalities. Try as many as necessary until you find the one that “fits” you and helps you with your concerns.

• Choosing a therapy modality can be difficult but so worth it. Finding a therapist that specializes in a particular area (i.e. play therapy, art therapy, dance therapy, telephone/ video health) can really lead to great success and make a huge difference when seeking help.

The most important thing to remember is that seeking help is beneficial. There is no shame in reaching out to a professional. Managing a chronic condition is extremely difficult but with the right coping strategies and support network, you can live, thrive, and have a fulfilled life.

References

Miravitlles, M., Pena-Longobardo, L., Oliva-Moreno, J.& Hidalgo-Vega, A. (2015). Caregivers’ burden in patients with COPD. International Journal of Chronic Obstructive Pulmonary Disease. 10. 347-356. doi: 10.2147/COPD.S76091

Pertrosky, E., Webb, R., Kontopantelis, E., Doran, T., Qin, P., Creed, F., & Kapur, N. (2014).

Suicide Risk in Primary Care Patients with Major Physical Disease. Archives of General Psychiatry 69(3). 256-264.

Schwartz, C., Powell, V., & Eldar-Lissai, A. (2017). Measuring Hemophilia Caregiver

Burden: Validation of the Hemophilia Caregiver Impact Measure. Quality of Life Research. 26. 2551-2562.

DOI: 10.1007/s11136-017-1572-y.

Witkop, M., Lambing, A., Nichols, C., Munn, J., Anderson T., & Tortella, B. (2019). Interrelationship Between Depression, Anxiety, Pain, and Treatment Adherence in Hemophilia: Results from a US
Cross-sectional Survey. Patients Preferences and Adherence. 13.1577-1587. Doi: 10.2147/PPA.S212723.

Anna Maria Bell is a graduate of The Catholic University of America Master’s Program in Social Work with a concentration in Gerontology and a graduate of Capella University with a Master’s Degree in Public Service Leadership. She is currently ABD at Walden University where she is pursuing a PhD in Human Services. She is Clinically Licensed to Practice in the District of Columbia, Maryland, Virginia and the State of Ohio. She provides counseling to various populations including couples, children, adolescents, women, and geriatric populations. Anna joined the Hemophilia Foundation of America consultancy staff in 2015 as a facilitator/speaker, conducting trainings, seminars and facilitations. Anna conducts various workshops throughout the Washington DC Metropolitan Area.