Living with GVHD can be an emotionally difficult experience for 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:
- 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 what’s next around the corner, whether things will get worse or better and how long the GVHD will last. This is why we often hear ‘it is 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.
- 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 who has experience working with transplant survivors. 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.
It can be especially helpful to talk with others who have been down the same path. 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.
Journaling and creating works of art are wonderful ways to identify, express and process the many thoughts and feelings you may be experiencing.
Join a GVHD Support Group
BMT InfoNet hosts several support groups for GVHD patients for GVHD caregivers. The groups are led by a psychologist or social worker and offer a safe, private space to network with others who are living with GVHD.
If you would like to join a group, CLICK HERE for more details or phone Michala O'Brien at 847-433-3313.
If sadness, anxiety, mood swings or depression are affecting your quality of life, don’t ignore those feelings.
- Ask your healthcare team for a referral to a mental health provider or find one through BMT InfoNet’s Directory of Mental Health Providers.
- Seek support from others who have had GVHD through BMT InfoNet’s Caring Connection Program or phone 888-597-7674.
- BMT InfoNet also offers support groups via Zoom for GVHD patients and their caregivers. Email email@example.com for details or phone 888-597-7674.
- Be The Match® offers free counseling to GVHD patients and their caregivers. Phone (888) 999-6743.
- Ask your doctor whether medication may help stabilize mood swings and reduce anxiety.
- Explore self-help measures like meditation, relaxation programs and exercise to relieve stress.
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.
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.
Watch the video Managing Emotional Challenges after Transplant that includes demonstrations of mindfulness, breathing and other stress reduction techniques and read the transcript.
Watch the video Thriving, Not Just Surviving, after Transplant through Exercise and Fatigue Management and read the trancript.
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.
- 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.
- Consider creating a ‘gratitude diary’ to record and remember positive events and things for which you are grateful.
- Explore opportunities to relieve stress creatively through journaling, art projects or music.
- Ask your doctor if it is safe for you to begin an exercise program either 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. Go to livestrong.org/ymca-search or call 855-220-7777 to find a participating YMCA near you.
- Practice self-compassion. Be as patient and compassionate with yourself as you would be with a close friend.
Watch the video Riding the Emotional Roller Coaster of Graft-versus-Host Disease or read the transcript.
If you use social media, learn more about living with graft-versus-host disease and advances in treatment at #GVHD. Connect with others and show your support for GVHD patients.
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Next Page: GVHD Caregivers
Updated September, 2023