Managing the Emotional Toll of Living With Myelodysplastic Syndrome (MDS)

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Coping With MDS

Myelodysplastic syndrome (MDS) is a type of blood cancer, and like any other serious illness, can have a big impact on a patient’s emotional health.
Many patients approach treatment with a sort of “glass half-full” attitude, but others struggle to remain positive as MDS has a big impact on day-to-day life.
It’s completely normal to feel overwhelmed emotionally by a cancer diagnosis and you should feel comfortable talking to your doctor about mental health issues.
If you are struggling with feelings of hopelessness, depression, stress, etc., your doctor can recommend many different resources such as support groups, therapy, lifestyle interventions and more.

Like any other serious illness, myelodysplastic syndrome (MDS) can take a serious toll on a patient’s mental health. Whether you need to begin treatment immediately, or the disease is considered low-risk enough that you can be simply monitored instead, a diagnosis is a big life change.

Dr. Eytan Stein, Chief of the Leukemia Service at Memorial Sloan Kettering Cancer Center, tells SurvivorNet that approaching treatment with a positive attitude can make a huge difference in how patients adjust to this change. But it’s important to realize that not everyone can muster up that positivity in the face of adversity and there are options to help those who are struggling.

“If a patient is coming in weekly for blood or every other week for blood, I don’t upfront tell people, ‘Oh, it’s going to be terrible. You’re going to be spending all of your time here.’ I don’t say it like that,” he explains. “What I found is that there are some people like with everything else in life there are some people that adapt better to adversity than other people.”

Some simple tips for staying positive after a diagnosis include:

Focusing on small positives (more time to read during regular checkups or stopping for your favorite snack on the drive home could both be considered simple pleasures)
Surrounding yourself with family and/or loved ones
Building a support community/not being afraid to ask for help you need

“There are some glass half-full people and then there are people who struggle with it,” Dr. Stein adds. “In those people … what I can do is refer them to support groups so that they know they are not the only people going through this and that there are people who are going through a similar thing, and then also to psychologists and counselors who can just listen and help normalize [the treatment path].”

Where can patients turn for emotional support?

As Dr. Stein points out, your doctor may be able to refer you to any number of resources if you are struggling with the changes MDS has caused in your life. This could include support groups, traditional therapy, lifestyle interventions, and so much more.

In order to keep your mental health in check, it's important to be aware of signs which can be subtle that there is something affecting your mind. When you’re dealing with something like MDS, it’s normal to think of the diagnosis as a burden. Some other symptoms that may indicate stress, depression, or a related issue include:

A change in eating or sleeping habits
Losing interest in people or usual activities
Experiencing little or no energy
Numb and/or hopeless feelings
Turning to drinking or drugs more than usual
Non-typical angry, upset, or on-edge feelings
Yelling/fighting with loved ones
Experiencing mood swings
Intrusive thoughts
Trouble getting through daily tasks

These symptoms can be wide-ranging and vary a great deal from person to person. If you are feeling unusually sad, on-edge, or like you're no longer interested in activities you used to love, know that there are many treatment options available and many different healthy ways to help you cope.

"The way people respond is very variable," Psychiatrist Dr. Lori Plutchik told SurvivorNet in a previous conversation about the toll a cancer diagnosis takes on mental health. "Very much consistent with how they respond to stresses and challenges in their life in general."

Psychiatrist Dr. Lori Plutchik explains the range (and fluidity) of emotions people often feel when dealing with a cancer diagnosis.

“People have a range of emotions when they're diagnosed with cancer and they can include fear, anger â€¦ and these emotions tend to be fluid. They can recede and return based on where someone is in the process. Going through a cancer diagnosis is just the beginning of a complicated, complicated process,” she added.

What about treatment?

If you are struggling to maintain a positive mindset after an MDS diagnosis, there are plenty of treatment options available. It may take a while to find one that works for you and that’s OK, too. Some people really thrive in talk therapy, while others would prefer the camaraderie of a support group. They key is finding the support that truly meets your needs.

Treatment options include:

Seeking professional help from a psychiatrist or therapist
Learning healthy coping skills (such as exercise, writing, or art)
Medication such as antidepressants
Adding more physical activity to your routine
Adjusting your sleep schedule
Connecting with others via support groups
Mindfulness and meditation

Don’t be afraid to speak to your doctor about your options when it comes to taking care of your emotional health as this is a critically important part of your treatment path as well.

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