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When you or your loved one is diagnosed with myelodysplastic syndrome (MDS), it can be hard to process. MDS, a type of cancer in which the blood-forming cells in bone marrow are abnormal or don’t work right, is a complicated disease to understand. That in itself can make you feel stressed and anxious. It also has an uncertain prognosis, which can be even more emotionally challenging. 

To help you better understand the impact MDS can have on your mental health and how to manage it, these experts will share their tips on what to look for and what helps most.

Common Mental Health Effects of MDS

When people get diagnosed with MDS, they've usually never even heard of it. While the reality of cancer can be life-changing, not being familiar with the condition can put more strain on your mental health. Most often, that means anxiety, distress, and depression. If you have high-risk MDS, functional issues, or a transfusion dependency, you may have a higher chance of anxiety and depression. These mental stressors can not only affect you emotionally, but can make fatigue, weakness, and brain fog that come from dealing with the physical symptoms of MDS and its treatment worse. Let’s dive into how these mental health issues may affect you throughout your MDS journey. 

Anxiety. You may have anxiety because you're concerned about the uncertainty of your treatment, prognosis, and the future. Anxiety can show up as uncontrolled worry, restlessness, or angry outbursts. It could also appear physically in the form of muscle tension, dry mouth, or trembling. 

Distress. This includes negative feelings ranging from helplessness to uncertainty of your faith, purpose, or meaning in life. A certain amount of distress is totally normal. It's more of an issue when it gets in the way of treatment, makes it hard for you to function or cope, and affects every part of your life. You may have trouble sleeping, eating, or concentrating, and you might have frequent thoughts of illness and death.

Depression. Feelings and periods of depression are common if you have MDS and can exist alongside anxiety and distress. These feelings are normal but can become serious if you've been sad for a long time, feel that life is not worth living, or are having trouble carrying out day-to-day activities. You could also have drastic shifts in appetite or sleep patterns.

Signs You May Need Mental Health Support

There are some common ways to tell if you're struggling to cope with your MDS diagnosis and may need to seek professional help. These are some signs you and your caretakers should watch for.

Social isolation. Some people may isolate themselves from others or wish people would leave them alone. You might also believe no one knows how to take care of you.

Helplessness. You may think that you must have done something bad to deserve this or believe cancer is your fate and don't see the point of fighting it. If you feel anger, hopelessness, sadness, emptiness, or worry for more than 2 weeks, it may be a sign to get professional support.

Apathy. This could look like losing interest in or not enjoying activities that you used to like. Your feelings might also keep you from doing normal activities. Sometimes, people will stop wanting to go to appointments or may insist they feel fine rather than share their symptoms with their doctor.

"That's where we really look to the caregiver to say, 'That's not true,' " says Tracey Iraca, executive director of the MDS Foundation. "You really need that second person to be honest about what's happening, because if a patient's not being honest about their symptoms, it could be deadly."

Tension. This can show up in a few ways. You could struggle to sleep and relax, for instance. Or you may dwell on medical problems, obsessively check online forums or your lab work, or talk more often about death and being a burden. Some people, when they're upset, turn to unhealthy coping mechanisms, like alcohol.

Tips for Prioritizing Your Mental Health

There's a lot to manage when you have MDS, but you must put your mental health first. There are a few things you can do to prioritize activities that support your mental well-being.

Acknowledge how you're feeling. Do this with self-compassion. It's OK to admit that MDS isn't easy on you and your family.

"Recognize the instances when you are being hard on yourself," says Sermsak Lolak, MD, an oncology psychiatrist at the Inova Schar Cancer Institute. "Try to focus on the things that are under your control."

One of the best things you can do, according to Iraca, is educate yourself on MDS. "When you are told you have MDS, there's a feeling of 'I've lost control of my body,' " she says. "And I think educating patients on what's happening in their body and how they can take control of it is really important."

Set healthy coping habits. Find ways to reflect on and process your experience. Some places to start include exercise, journaling, art, reading, meditation, or talking to a counselor. Try a few things, then stick to the ones that work best for you. It's also always good to get quality sleep, and to avoid alcohol, which can make depression worse.

Form daily or weekly routines. This can also help give you a greater sense of control and make life more predictable. You may want to focus on activities that you can still enjoy, whether that's watching sports on TV or listening to your favorite music to lift your mood. You can also spend time with loved ones like a romantic partner, friends, family, and even your pets. 

Remember to be present. Remind yourself that it's often not helpful or accurate to try to predict the future, especially when you're coming from a place of anxiety and struggle.

"Even though it’s good to plan things ahead, most of the thoughts we have about the future don’t help and can take away your engagement with the present," Lolak says.

Identify your biggest needs. Knowing what you need can help you pick the right support services. Think about the specific things you're struggling with, how much your emotions bother you, and how you have coped in the past to figure out the best path forward for you. Reach out to your cancer care team about any mental health issues you're having so they can help you find the right support.

Resources for Mental Health

It's normal to feel some level of depression, anxiety, or worry when you have MDS. But there are many ways you can support your mental health, whether through friends and family, religious groups, support groups, professional counselors, or online tools.

Support groups

Support groups can help lower tension, anxiety, and tiredness, and may lower your odds of having depression. Talking to others about your experiences can also help you feel better about your well-being and overall quality of life.

You can find local and national support groups led by cancer survivors or oncology social workers, psychologists, or oncology nurses. There are also online and in-person groups for people with MDS, people with cancer in general, specific gender groups, people having certain treatments, and more.

Individual counseling

Talking one-on-one with a trained professional may be especially helpful if your feelings are keeping you from doing your normal activities. They will help you find ways to deal with some of the more challenging feelings and concerns you have about MDS, such as changes in your life, concerns about your relationships, and more.

Patient advocacy organizations

Some of the best places to go for support are organizations that focus on empowering patients through resources, education, and connectivity outside the doctor's office. Because these organizations offer a wide range of support, services, and resources, they can be very useful in helping you find the mental health help you need. 

These organizations have everything from online message boards and webinars to in-person forums that allow you to ask questions and meet other people going through a similar journey as you. Some to consider include[1] :

  • MDS Foundation
  • MDS Alliance
  • Cancer Support Communities
  • Leukemia & Lymphoma Society
  • Aplastic Anemia and MDS International Foundation
  • American Cancer Society

Show Sources

Photo Credit: E+/Getty Images

SOURCES:

American Cancer Society: "Psychosocial Support Options for People with Cancer," "Effect of Attitudes and Feelings on Cancer," "Living as a Myelodysplastic Syndrome Survivor," "How Well Are You Coping?" "Depression," "What Is Distress?" "Anxiety," "What Are Myelodysplastic Syndromes?"

Blood: "The Mental Health Burden and Quality of Life Impact of Myelodysplastic Syndromes in Patients and Their Caregivers."

MDS Foundation: "The Emotion of Living with MDS: Depression, Anxiety, Uncertainty and Sadness,"

Patient Related Outcome Measures: "Patient and Caregiver Insights into the Disease Burden of Myelodysplastic Syndrome."

Tracey Iraca, executive director, MDS Foundation.

Sermsak Lolak, MD; oncology psychiatrist, Inova Schar Cancer Institute; clinical professor of psychiatry, George Washington University.