It’s completely normal to feel anger, shock, and sadness when — after going through the extremely difficult transplant experience — you’re hit with graft vs. host disease (GVHD). The uncertainty of not knowing whether your symptoms will improve, how long they’ll last, or what tomorrow will bring is hard. Our minds and bodies are so interconnected that there’s no separating the two — when we’re struggling with physical illness, it takes a toll on our mental health as well.
And while the physical symptoms of GVHD are often obvious — skin rashes, dry eye, GI upset — the emotional and mental side effects that no one can see are just as real, and just as disruptive to everyday life. The depression, anxiety, post-traumatic stress disorder (PTSD), and panic attacks that can accompany the disease can be debilitating both for the patient and their caregiver(s), which is why it’s imperative to learn coping strategies, and find relaxation techniques that help you and those caring for you manage their mental health.
The healthier you are mentally, the healthier you’ll be physically, too!
Identifying Mental Health Struggles
The “silent” symptoms of anxiety and depression come in lots of shapes and sizes. You may experience things like increased heart rate, trouble sleeping, emotional instability, headaches, muscle aches, extreme fatigue, racing thoughts, decreased interest in activities you used to enjoy, a desire to isolate from others, uncontrollable thoughts, endless worry, or feelings of hopelessness or sadness. It can look different for everyone.
The stress becomes so severe for nearly a quarter of transplant survivors that they develop post-traumatic stress disorder (PTSD) after their procedure. Patients may have nightmares, extreme anxiety, or flashbacks that make it difficult for them to function in day-to-day life. Maybe you can’t go back inside the hospital where your transplant took place. Or driving a certain route brings on a flashback to the appointment when you were told you had cancer. When your body registers an experience as a trauma, it remembers, and tries to protect you from experiencing that trauma again.
For some people, the struggle with mental health is a familiar one, having started long before their diagnosis. For others, it began after the disease took hold because of the changes their body went through, or the medications they’re taking.
Prednisone, for example, is known to cause mental and emotional side effects in some people. New onset depression, anxiety, mood disturbances, delirium, lethargy, and even psychosis can all result from ongoing steroid therapy…which is why it’s extremely important to report any changes in your mood or behavior to your doctor right away, so they can determine the root cause. They can advise whether it’s safe to remain on your medication and if other mood stabilizing medications need to be added to your routine.
Seeking Professional Help
“The goal is to learn to manage GVHD without being defined by it.” – BMT Infonet
We know that’s easier said than done, but trust us…it’s possible!
There’s not a one-size-fits-all approach to managing the feelings and uncertainty that comes from having a chronic disease like GVHD. There will be days when you feel like giving up. There will be days when you feel scared. Or sad. Or angry. The key is to understand that these feelings are just that — feelings. They will change, and they will pass. But it’s important to allow yourself to experience whatever emotions come over you, and give yourself time to grieve the things that GVHD has taken from you.
GVHD is an emotional rollercoaster — you need people surrounding you to help you navigate the highs and lows, and maintain your sense of self through it all. One of the best ways to do that is to establish a relationship with a psychologist, professional counselor, or pastoral counselor trained in helping transplant survivors — someone who can really help you process what you’re going through. Friends and family can provide invaluable support as well, as can other survivors who are going through similar experiences…but nothing can replace the help a professional can provide.
Ask one of your trusted medical providers or fellow survivors for suggestions, or check out BMT Infonet’s directory of mental health care practitioners to find someone to talk to. And if you don’t feel it’s a good fit with the first provider you find, keep looking — sometimes it takes several attempts before you find the right person, and that’s a-ok!
Maintaining Connections
Your social life may look different after a GVHD diagnosis, but it’s more important than ever to maintain relationships and lean on others for support.
It’s natural to be worried about how your symptoms may affect your social activities…lots of people feel anxiety around social situations after diagnosis that they may have never had before. If you have GI GVHD, for example, you might be constantly worried about where the nearest bathroom is. Or perhaps you have skin GVHD, and those summer picnics in the sun are suddenly troublesome. Or you’re tired, and you’re worried your friends won’t understand.
The key is to be honest and make a plan. If you need a bathroom, make sure wherever you’ll be has one, and you know where it is. If you’re going to be in the sun, bring the appropriate protective clothing/hat/sunglasses, and make sure there’s shade somewhere nearby. If you have trouble staying out for hours at a time, set a limit to how long you’ll be away from home and stick to it.
Being able to clearly communicate your needs and fears may be tough and feel unnatural at first, but it’s extremely important!
Finding support groups to connect with other survivors is immensely helpful, too. There are lots of great resources to aid in this — here’s a few to consider:
To connect with another survivor for one-on-one peer support, check out BMT Infonet’s Caring Connections (https://bmtinfonet.org/get-help/talk-survivor-or-family-caregiver) or NMDP’s Peer Connect Program (https://bethematch.org/patients-and-families/support-for-you-and-your-family/peer-connect-program/).
You can also plug into one of BMT Infonet’s support groups by filling out this registration form: https://bmtinfonet.org/gvhd-patient-support-group-waitlist-registration-form
Online Facebook support groups, like GVHD Upside, are great places to connect, too.
Additional Strategies to Combat Stress
Mindfulness
You may have heard the term “mindfulness” before, but what exactly does it mean? And how can mindfulness exercises help someone with GVHD?
Mindfulness is a stress-reduction technique that aims to take someone’s attention away from whatever is troubling them by helping them focus on feelings and thoughts in the present moment only. Activities like meditation, yoga, and focused breathing are all examples of mindful practices that many people are familiar with, and they’re easy to do anywhere, anytime.
One of our favorite mindfulness techniques is the 5-4-3-2-1 method. First, identify five things you can see from where you’re sitting or standing right now; next four things you can touch; then three things you can hear; two things you can smell; and finally one thing you can taste. By focusing on things in the present moment only, your mind is forced to shift away from anxious thoughts about the future — it’s a great “grounding” exercise that pulls you back to reality if you find yourself in an endless spiral of worry.
There are tons of these kinds of exercises out there, and they’re all easy to learn. You can download apps like Headspace and Calm to guide you through meditations, or a simple Google search will lead you to lots of techniques to try until you find one that works well for you.
Breathing exercises
Most of our bodily functions aren’t under our direct control — things like digestion, heart rate, and blood pressure, for example. But breathing is different. We can directly affect how often and how we’re breathing, which can signal our entire body to relax.
Using breath to relax isn’t hard, once you get the hang of it…but it’s a very different kind of breathing than most of us are used to doing in our day-to-day lives. When you’re feeling stressed, you’re likely breathing quick, shallow breaths from your chest.
To relax, breathe from your belly — you should be able to see your stomach expand out as you inhale and fall as you exhale. It can be helpful to hold your hand lightly on your stomach to ensure you’re breathing properly at first. This is called diaphragmatic breathing.
Once you have that down, there are lots of different breathing exercises to try…an easy one is called “box breathing,” where you breathe in (from your stomach) for four counts, hold at the top of the breath for four counts, exhale slowly for four counts, then hold again for four before starting over. Imagine yourself moving along each side of a box as you do it.
Here are a few others to consider, but always talk to your doctor about which exercises are right for you.
Practice gratitude
Start your day by thinking of five things you’re thankful for. It’s often said that the mind can’t be thankful and anxious at the same time — think of it as a worry hack!
Exercise
If your doctor approves, start an exercise program to keep your body moving. Exercise is scientifically proven to improve both immune function and mental health. Walking is an easy way to start — try 10 or 15 minutes and build up to 30 minutes at least several times a week.
Focus on what you CAN control
It’s easy to get caught in a spiral worrying about things you can’t control. Instead, focus on the things that ARE in your control — what you eat, exercise, getting proper sleep, practicing relaxation techniques, etc. No amount of worry will increase your level of control — if anything it only makes you suffer something (that may not even happen) twice!
Eat a healthy diet and get plenty of sleep
Start thinking about the foods you eat as the fuel for your recovery — work with a nutritionist to put together a plan that’s best for your unique situation. And focus on getting high-quality sleep each night — create a relaxing, cool, environment in your bedroom, stick to a nightly routine, and steer clear of cell phones and TV an hour before bed. Eating your last meal three hours before bed is good practice, too, so your body can focus on repairing itself overnight instead of digesting your food.
Spend time in nature
Even just 20 minutes spent in nature is enough to lower stress hormones, according to a study published in Frontiers in Psychology in 2019. Sitting in the park, yoga, taking a walk — it all counts as long as you’re outside!
Use art therapy to get what’s inside out
Even if you don’t fancy yourself an artist, expressing yourself through various forms of art can be very therapeutic. Drawing, painting, coloring, creating collages, etc. are all great ways to move your feelings outside your body. No one ever has to see your creations but you!
Retraining Your Brain and Restructuring Your Thoughts
Also called cognitive restructuring, cognitive behavioral therapy can help you identify thought patterns that are flawed or unhealthy and learn to think in a different way. Working with a professional counselor can be especially helpful in doing this. Here’s several examples of unhealthy thought patterns:
Overgeneralizing, or “all or nothing” thinking – “I can’t run a marathon anymore, so I might as well not even bother jogging at all.”
Filtering, or only focusing on the negative in any given situation – “My doctor says I’m making great progress, but that one lab value is still abnormal. I can’t stop thinking about it.”
Catastrophizing, or thinking of the worst possible scenario in every situation – “I feel a new pain in my stomach – my cancer must be back.”
Keeping a journal or log of your thoughts can help you identify unhealthy patterns…then it’s time to reframe those thoughts in a healthy way.
“I can’t run a marathon anymore, but I’m thankful I’m still able to walk a mile a day. I know I’ll build back up to jogging someday.”
“My doctor says I’m making great progress, and she’s not worried about that blood value that’s a little high. It will come down, she’s going to recheck in a few weeks just to be sure. I trust her judgment.”
“I feel a new pain in my stomach. I did start working out again recently, it’s probably a pulled muscle. If it’s not better in a few days, though, I’ll mention it to my doctor.”
Another tip? Hold your thoughts captive and determine if they’re rooted in fact or fear. Most of the time our distorted thoughts are rooted in fear, and reminding yourself of facts will reduce anxiety.
Addressing Caregiver Stress
As hard as it is to be a GVHD survivor, it’s important to remember that it can be equally challenging in different ways for the person (a spouse, parent, or friend) who takes on the role of caregiver. It’s a lot of responsibility, and a lot of stress. Being a caregiver is a job many people never thought they’d have — but they suddenly find themselves thrust into the role when a loved one is diagnosed with a life-threatening disease.
Caregivers need to look after their mental health just as much as the patient does. Here’s a few ways to do that:
- Seek out support from other caregivers — having a support network for yourself is vital.
- Actively work to keep yourself physically and mentally strong by eating healthy, exercising, and seeking support and counseling.
- Create a routine, and build time into your day to take care of yourself. Self-care often becomes an afterthought in these situations, and that’s not healthy.
- Don’t be afraid to ask for help — you can’t do it all on your own! Think of things others can help you with…preparing meals, taking care of children or grandchildren, walking your dog, etc.
- Speak up! Your needs are important, too, and effectively communicating them to others is essential. Relationships and roles may change, and it’s important to talk about it.
- Take breaks — if you have someone else you can lean on, let them step in from time to time so you can pull back and recharge.
- Plan ahead, but realize that chronic disease is ever-changing — the more flexible you are the easier the ups and downs will be to handle.
- Give yourself credit…you’re doing great! And treat yourself the way you would a friend…be compassionate and understanding with yourself.
Here’s an awesome article from BMT Infonet with lots more suggestions and info, too.
Video Resources
If you’d like to keep learning more about GVHD and its effect on mental health, check out this helpful presentation — “Riding the Emotional Rollercoaster of GVHD” — from the 2019 GVHD Patient Summit.
And don’t forget about BMT Infonet’s Directory of Mental Health providers; use it as a resource to find the help you need 24/7/365!
Sources
- https://bmtinfonet.org/transplant-article/gvhd-caregivers
- https://bmtinfonet.org/video/graft-versus-host-disease-caregivers-are-survivors-too
- https://bmtinfonet.org/video/gvhd-caregivers-building-resilience-road-recovery
- https://bmtinfonet.org/video/riding-emotional-roller-coaster-graft-versus-host-disease
- https://bmtinfonet.org/transplant-article/coping-stress-graft-versus-host-disease