In your work with bone marrow failure disease patients, what are the common emotional and psychological symptoms and reactions you have
Some of the common emotional responses we see in the early stage of diagnosis include feeling “shocked” or betrayed – where patients think, “How could my body have let me down?” Others may feel confused, centering on “what does this illness mean?” -- primarily because it’s a rare disease that is unknown to many until it happens to them. and certainly, newly diagnosed patients feel overwhelmed. However, after this initial phase, most people are able to move forward. For those patients who have significant distress during the time, we recommend psychotherapy with the goal of focusing on more healthy coping mechanisms.
As mentioned above, most people are able to move forward emotionally after the initial shock of the diagnosis, typically within two to four weeks. However, about 30% of patients progress to true depression or anxiety disorders that interfere in their daily lives. this is characterized by feeling down or depressed every day for two weeks, as opposed to what everyone has -- about one bad day a week. For patients with either a depressive disorder or an anxiety disorder, more intensive treatment is warranted, often including psychiatric medicines such as antidepressants.
With regard to caregivers, they typically do very well during the initial diagnosis phase. However, they can develop emotional distress once the treatment plan is in place and the patient has been able to move forward emotionally. After that adjustment period, we want to see the caregivers going back to things that they love doing, not spending 100% of their time focusing on the patient or giving up things that they enjoy so that they can always be watching the patient.
Can there also be physical complications that arise from mental and emotional stress?
It’s important to distinguish between physical symptoms that may be from the disease itself and the emotional consequence of the disease. for example, patients not wanting to participate in some activity that they previously engaged in -- such as playing golf -- could be due to the fatigue that often
is associated with a bone marrow failure disease. But if the reason is loss of interest – that is a warning sign that could indicate depression or an anxiety disorder. We know that emotional reactions that can happen may cause worsening physical symptoms, because patients may not adhere to treatments – for example, missing transfusions, not taking daily medicines, which can have serious effects on their illness.
If a patient is having difficulty coping, he or she may not require medical treatment. Seeing a therapist can be very beneficial. Many studies have shown that psychotherapy can help patients improve already existing coping mechanisms and develop new coming techniques. In addition, psychotherapy is an excellent treatment for depression and/or anxiety.
Medicines can also be used to treat depression or anxiety disorders. However, they should not be taken just for difficulty with adjusting to a serious illness. These medicines are taken daily and as with any medicines, they do have the risk of side eff ects. Both depression
and anxiety are very common illnesses and having had a history of either puts a person at higher risk of developing another depressive episode or return of anxiety in the setting of a new medical diagnosis.
Many times, we recommend both a medicine along with psychotherapy for patients with depression or an anxiety disorder. Sometimes patients will opt for one treatment or the other for a variety of reasons. Some patients don’t want to do psychotherapy because it is time-intensive; however, psychotherapy has excellent outcomes, and there are no drug-drug interactions. Others will opt for
a medicine alone. regardless, if someone is having true major depression or an anxiety disorder, some type of treatment is warranted.
Are some coping strategies known to be more effective and more helpful than others?
what has worked for them in the past. Developing coping skills is a lifelong endeavor – everyone’s had stress. So the healthy coping mechanisms you have used before are the ones you should try now. A radically diff erent set of coping tools apart from your normal ones probably won’t help and will likely lead to much frustration.
How do you help patients cope with these and other emotional symptoms that arise from being diagnosed with bone marrow failure diseases?
I want to know what patients are currently doing to manage stress, and i start by asking how they have
coped with stressful situations in the past. i have them specifically identify what they already do to deal with stressful things at work, at home, at school, and other life situations.
There are many things that can help with stress reduction. Relaxation techniques are important, and if patients can’t immediately identify one they currently use, then it is time to learn. an easy relaxation technique is deep breathing. this can be learned pretty quickly and with some practice, patients can turn to in times of stress. Others include ‘journaling’ or writing down thoughts and responses and meditation.
Routine physical exercise is also an excellent way to wind down stress. Sometimes bone marrow failure disease patients who experience fatigue can’t maintain an earlier exercise regimen and need to find alternative exercise plans.
To summarize, turning to your supports, such as calling a friend, along with relaxation techniques and exercise, can be excellent ways to handle the stress of a chronic illness. Patients need to experiment and fi nd what works best
How do support groups help?
From my perspective, support groups and networks are exceptionally valuable. But if patients say they aren’t interested in participating or feel they will not benefit from participating in a support group, I may ask them to at least try it once or twice. Most large cities have a patient support organization where these types of groups are formed and conducted. Many will also have other types of activities including exercise classes. So if a patient does not want a support group, I might suggest they use the
services of the organization in some other beneficial way. While an exercise class at one of these organizations is not a classically defined support group, this can result in being in a supportive environment. Many of my patients will do this type of class as a segue into doing a more formal support group.
Are there any new trends or directions in the practice of counseling patients who are having stress-induced and emotional diffi culties?
What is the most important advice you can give patients for effectively coping with their bone marrow failure disease?
I can’t emphasize enough that what has worked in the past is what will work for you now. When someone is facing a serious medical illness, trying to completely change your coping mechanisms is a mistake and will result in much frustration. Strengthen your healthiest coping techniques and eliminate any unhealthy practices. Try to recognize if you are slipping into depression or anxiety disorders, and seek help if you think things are getting worse.
If you are having a depressed mood or a decrease in your interests for over two weeks, you should get help now. Depression and anxiety disorders can affect your quality of life and your ability to adhere to a treatment schedule, resulting in worsening of the perception of pain. These illnesses can be eff ectively treated and should be! Physicians of all specialties, including hematologists and oncologists commonly involved in the care of MDS patients are well aware of the impact of these psychiatric illnesses. At my institution, they often encourage their patients to seek treatment and will refer to our
psychosocial oncology program. These support services are very common in cancer centers, and if you are having problems, talk with your physician.