10 Ways to Cope With the Emotional Aspects of Graft-Versus-Host Disease

People who develop graft-versus-host disease (GVHD) go through a lot, even before being diagnosed. GVHD is a potential complication of a stem cell or bone marrow transplant — often used to treat blood cancers, such as leukemia and lymphoma — according to the Leukemia & Lymphoma Society.

Skin rash, gastrointestinal (GI) problems, liver dysfunction, and other symptoms can develop as acute GVHD within 100 days after a transplant or crop up as chronic GVHD months — or even years — later, according to Cleveland Clinic. These symptoms can be mild, moderate, severe, or in some cases, life threatening.

Before GVHD develops, you’ve likely already gone through a range of emotions. “The emotional toll of going through a stem cell transplant is significant,” says Elizabeth Muenks, PhD, who specializes in working with the Blood and Marrow Transplant Program and is the clinical director of psychology services for hematologic malignancies and cellular therapy at the University of Kansas Health System in Kansas City. “From pre-workup to recovery, patients are faced with challenges and uncertainty at every corner, utilizing just as much physical energy as emotional and psychological.”

The transplant process starts with an extensive physical workup, a search for a well-matched donor, education, and preparation. This is followed by intense chemotherapy prior to transplant, which often comes with serious side effects that are difficult to tolerate, including fatigue, hair loss, and nausea.

Then, the transplant process itself is long and arduous. You may be in the hospital, away from home, for months.

Transplant recovery is slow. It requires isolating yourself from others to avoid potentially deadly infection. The process often also comes with financial and relationship stress. “Low mood due to significant life changes and loss of job, social support, and identity is common, along with worry and fear about the unknowns, like the transplant not being successful,” says Dr. Muenks. You may also feel guilty for relying on a caregiver constantly after the transplant.

“Stem cell transplant is an emotional and physical marathon that no one has trained for, was prepared for, or signed up for by choice,” emphasizes Muenks.

Common Emotions When GVHD Develops

Being told about the potential for GVHD can feel like a trade-off of one scary diagnosis, such as cancer, for another. GVHD can affect quality of life and require lifelong management in some cases.

“In pre-transplant meetings, I was told that GVHD is quite serious, and the risk of death was a possibility. Trying to wrap my head around the fact that the same thing that could save my life could also possibly kill me was extremely scary and very confusing,” says Nick Wasserman, 34, a business owner in Oregon, Ohio, who underwent a stem cell transplant in September 2019.

Wasserman says the most challenging part was understanding that while serious, GVHD after a transplant was not uncommon.

“GVHD can affect any part of the body — eyes, skin, mouth, genitalia, gastrointestinal system, and lungs,” explains Muenks, “and medications like steroids cause weight gain, insomnia, wear and tear on bones and joints, and continued psychological stress.”

Five months after his transplant, Wasserman developed symptoms, including dry skin, a rash that covered 90 percent of his body, severely dry eyes, bloating, abdominal pain, and diarrhea.

Doctors told him he had chronic GVHD of the eyes and GI tract. This left Wasserman feeling fearful and confused. “As the symptoms continued to develop, I started to question whether or not the transplant was going to be successful long term,” he says. “It made living my daily life extremely difficult from a mental perspective; I was constantly pushing myself to remain positive, but it became harder and harder as things progressed.”

GVHD symptoms caused Wasserman to shut down around family and friends. He also had to take high-dose steroids for more than a year, and the side effects were difficult to manage. It all took a mental and physical toll.

Luckily, his symptoms resolved by January 2021.

10 Tips to Help You Cope With GVHD

Given the physical and mental challenges of GVHD, it’s important to have the right tools to deal with it. “When it comes to coping with and managing GVHD, education, self-advocacy, and support are key,” says Muenks. Here are 10 ways to accomplish just that:

1. Talk to your doctor. If you suspect you have GVHD or your symptoms change, it’s time to call your doctor. “Bringing any and all potential symptoms or issues to your medical team’s attention will allow for quicker treatment,” says Wasserman. “I found myself at times denying these issues, and I understand now that this could have hurt me if I let it go on too long.”
2. Educate yourself. “Educating yourself about not only your diagnosis but also potential complications (including GVHD) from reputable sources, such as your medical team or trusted websites like the Leukemia & Lymphoma Society, can help you feel less surprised or blindsided,” says Muenks.
3. Ask questions. Make sure you understand the details of your specific GVHD diagnosis. Because the disease can strike different parts of the body, it’s important to know exactly how it’s affecting you. “Keeping open communication with doctors, transplant coordinators, and other medical staff is critical to knowing what to expect, but more importantly, to understand how your medical team will be there to treat and support you,” says Muenks.
4. Bring someone with you to your appointments. “Bringing a friend, family member, or caregiver to appointments to help retain information can take some of the mental load off of you and decrease stress,” says Muenks.
5. Open up to friends and family. Share what you learn about GVHD with family and friends you trust, and explain how it’s affecting you emotionally. “Your body is essentially in a constant fight, and sometimes that is not a visible thing,” says Wasserman. Even if your loved ones can’t do anything to relieve the symptoms, talking to them can help you feel heard and less alone.
6. Try to stay in the moment. “While worries about the future can take up emotional and psychological space, mindfulness meditation — through the help of apps or books — can help you learn to be present-focused instead of getting caught up in what’s to come or what is unchangeable,” says Muenks.
7. Connect with others who have experienced GVHD. Check with your hospital to see if they offer a support group, or join an online community for transplant recipients. Wasserman found support through a Be the Match Peer Connect program volunteer. “I cannot stress enough how having someone that could truly relate to what I was dealing with helped me,” he says.
8. Talk to a therapist who specializes in working with transplant patients. Some cancer centers have specialized social workers and onco-psychologists who can help you through common transplant-related concerns, such as anxiety, depression, fear, pain, grief, loss, sleep disturbance, and cognitive concerns, says Muenks.
9. Find ways to enjoy what you’ve always enjoyed. If socializing with friends has always helped lift your spirits, it’s likely still going to help when you have GVHD — even if you have to do it a little differently. “You may not be able to go to happy hour with friends anymore or drink alcohol, but you can set up an online game night or gathering on Zoom with friends and mocktails,” says Muenks.
10. Keep a positive attitude. Not every day is going to be great when you have GVHD, and that’s okay. While you don’t need to deny difficult emotions, it’s also good to keep them in check. “At times, this can be the hardest thing in the world, but remember what you are fighting for,” says Wasserman. If you are a person of faith, prayer and connection with your religious community can help as well.

If emotional struggles are affecting you, don’t hesitate to talk to your doctor or a therapist. Talk therapy, antidepressants, and antianxiety medications can also help, says Muenks.