Coping with the Stress of GVHD

Living with GVHD can be an emotionally difficult experience for both you and your family. After transplant, everyone wants to resume a normal life, but GVHD can make that difficult for a time.

It's normal to feel sad or anxious while dealing with GVHD. Physical changes, some of the drugs used to treat GVHD, fatigue, and sleep problems can cause:

• depression
• confusion
• anxiety
• mood swings
• exaggerated feelings of anger, excitement, or sadness
• sleep problems

It’s important to let your doctor know if you are experiencing any of these symptoms.

Sometimes, medications are offered to GVHD patients to stabilize mood swings and reduce anxiety. This is very common. Short-term use of these drugs does not mean you will be dependent on them long-term.

Living with Uncertainty and Change

Living with GVHD sometimes can feel like an emotional roller coaster, with ups and downs and unexpected twists and turns. It can be challenging to now have to deal with a new acute or chronic condition after having made it through transplant.

It’s especially hard not knowing whether things will get worse or better, and how long the GVHD will last. This is why we often hear, ‘It's a marathon, not a sprint’!

Figuring out how to adjust to physical, social, and emotional changes takes time. The goal is to learn to manage GVHD without being defined by it. Try to:

• take each day as it comes, one day at a time
• focus on what you can do, rather than what you can’t
• build flexibility into your plans since you don’t always know how you will feel
• notice small things that bring you joy and pleasure
• engage in non-medical activities that help you feel a sense of normalcy and remind you of who you are as a person

Talk about Your Feelings

If you have GVHD, it’s important not to ignore or downplay your feelings. Finding an outlet to express and process your feelings can decrease stress, facilitate problem-solving, and help you move forward in a healthy manner.

Talking with a social worker, psychologist, psychiatrist, or pastoral counselor often helps, especially one with experience working with GVHD patients and caregivers. You can ask your transplant center for recommendations or check out BMT InfoNet’s Directory of Mental Health Providers to find a person with this expertise.

Talking with others who have been down the same path can be especially helpful. Speaking with other survivors who ‘get it’ may make you feel less alone. In addition, they can share with you information and coping strategies that they found useful. You can seek support from others who have had GVHD through BMT InfoNet’s Caring Connections Program 

BMT InfoNet hosts several support groups for GVHD patients and GVHD caregivers. A psychologist or social worker leads the groups and offers a safe, private space to network with others who are living with GVHD.

Journaling and creating works of art are also wonderful ways to identify, express, and process the many thoughts and feelings you may be experiencing.

Exercise, Meditation, and Relaxation

Patients with GVHD often find that meditation, guided imagery, and relaxation techniques help them manage the stress of living with GVHD. Practicing mindfulness - living in the moment, acknowledging and accepting your feelings, and using techniques like slow, deep breathing to calm yourself - can help reduce anxiety.

Explore whether your hospital or a local cancer wellness group offers classes in meditation, guided imagery, and relaxation techniques. Try some apps designed to help you relieve stress. Calm.com and Headspace.com are two worth exploring.

Exercise can help improve strength, stamina, and sleep, and reduce fatigue, anxiety, and depression. Walking or gentle stretching, such as chair yoga, can make a difference.

Ask your doctor if it is safe for you to begin an exercise program under the supervision of a physical therapist or at a local gym. Some YMCAs have partnered with LIVESTRONG to offer a free 12-week exercise program to help cancer patients build endurance and reduce fatigue. Click here to find a participating YMCA near you.

Growth and Positive Change

Some changes can be positive, as well. Going through transplant has caused many survivors to re-evaluate aspects of themselves, their relationships, and their lives. Many GVHD survivors describe ways that they have grown and experienced positive changes, such as:

• learning new ways to do old things
• recognizing their own strength and ability to do things they didn’t think they’d be able to do
• making new or stronger connections with others
• finding new meaning in life

Taking time to find something positive each day can help to counterbalance the challenges of living with GVHD.

Some GVHD survivors find it gratifying to ‘give back’ by supporting others in a support group, volunteering, or participating in a research study that could provide valuable information for future survivors. Helping others can be a great way to help yourself.

Take Action!

If sadness, anxiety, mood swings, or depression are affecting your quality of life, don’t ignore those feelings.

• Join a GVHD Support Group or request a Caring Connection and talk with someone one-on-one who has lived with GVHD
• Seek help from a mental health provider who's familiar with GVHD
• Explore self-help measures like meditation, relaxation programs and exercise to relieve stress.
• Ask your doctor whether medication may help stabilize mood swings and reduce anxiety.
• Consider creating a ‘gratitude diary’ to record and remember positive events and things for which you are grateful.
• Practice self-compassion. Be as patient and compassionate with yourself as you would be with a close friend.