For some people GVHD comes and goes. For others it’s a much longer diagnosis. Just be patient and surround yourself with people who are of good support." Ivan Garcia-Burgos, GVHD patient
Living with chronic graph-versus-host disease (GVHD) can be very challenging and the constellation of problems affects everyone differently. It can cause excessive fatigue, which may limit your ability to take part in important activities. It may also lead to emotional distress and other chronic symptoms that can be difficult to manage.
Depression and anxiety
It is common to feel down and discouraged at times. Many people feel sad, disappointed or frustrated. When these feelings of sadness, irritability or anxiety last for a long period of time, you may need professional. Left untreated, depression or anxiety in GVHD patients may result in:
- Poorer quality of life
- Lower physical functioning
- Lower functional status
- Increased chronic GVHD symptoms
When symptoms of depression or anxiety become persistent and you experience serious distress that interferes with normal activity, it is time to think about treatment options. There are specific criteria that we use to diagnose clinical depression (major depressive disorder) or anxiety (e.g., generalized anxiety disorder or panic disorder). Effective treatment usually involves psychotherapy and/or medication (antidepressant) treatment.
For some patients the experience of a potentially harmful or life-threatening event, such as bone marrow transplant, can be traumatic. Most patients do not develop a full syndrome of a post-traumatic stress disorder (PTSD), but they experience a variety of symptoms known to be linked to trauma. These may include, but are not limited to:
- Intrusive thoughts, memories or nightmares about the transplant or illness
- Avoiding anything that may be a reminder of the transplant (e.g., clinic or hospital where they were treated)
- Feeling “on edge”
- Physical feelings of anxiety, e.g., heart pounding, shortness of breath
- Feeling emotionally numb
Chronic GVHD may serve as a reminder of the transplant. PTSD symptoms may become a problem when they are persistent and interfere with daily life functioning.
The term distress can assume many forms and it exist side-by-side with suffering. There are two broad categories of this type of distress:
- Spiritual distress: a period of disturbing spiritual struggle, during which a person questions their faith (What is the purpose of life? How could God allow me to go through this kind of suffering?)
- Spiritual despair: disturbing chronic distress in which an individual’s efforts to resolve the spiritual struggle has been unsuccessful (How can I make sense of what is happening to me? Life has no meaning and/or purpose.).
Specific types of spiritual distress include:
- Transpersonal: feeling unloved, abandoned or punished by God or higher power
- Interpersonal: feeling abandoned or injured by one’s faith community or its leadership; experiencing conflict with one’s family or friends because of one’s beliefs and/or practices
- Experiencing guilt or shame
- Internal doubts or conflicts
- Struggling with meaning and purpose concerning life in general or medical processes
- Questioning one’s moral values
- Thinking about death and fearing it
Religious or spiritual distress is real and patients with serious chronic illness such as GVHD do not have to go through it alone. Through their professional training and experience, chaplains can assist patients to cope with their spiritual distress.
What can you do to help yourself?
Having a strong support system is important for coping with emotional and physical symptoms that may result from GVHD. Families and friends are usually the main source of support. Some patients may find it difficult to share their thoughts and emotions with family and friends, who may not always understand what they are going through. GVHD support groups may help you feel more connected and provide helpful tips on how to cope with GVHD.
It may also be beneficial for you to find meaning in your journey. Some patients have found that giving back and finding a purpose in their new course in life can make managing the emotional aspects of GVHD easier. For instance, volunteering in a hospital may provide you with a sense of fulfillment and help you better cope with GVHD. Hearing about your experience may also help to ease some of the concerns of other patients.
Some other things you can do to enhance your health and coping include:
- Eat healthy and nutritious foods.
- Exercise regularly.
- Practice healthy sleep habits.
- Seek activities that bring you pleasure (e.g., listening to music, dancing, coloring, watching a favorite movie, visiting nature).
- Stay present and mindful in every moment of your day.