Medically Reviewed by Brunilda Nazario, MD on December 06, 2023
Your Life With Chronic Illness
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Your Life With Chronic Illness

When you have myelodysplastic syndrome (MDS), it’s not simple. You may never need treatment, but MDS is hard to cure.  You now have a new source of uncertainty and stress you didn’t have before. As with any chronic illness, it’s important to take care of yourself emotionally as well as physically.

Get the Facts You Need
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Get the Facts You Need

The first step with any new diagnosis is to get the facts you need. Ask any questions you have and seek any additional information you’d like from reputable sources or others who’ve been in your shoes. Understanding the facts about MDS, what to expect, and any treatment you’ll need can help you build a trusting relationship with your care providers. It also will help give you a sense of control. 

Express How You Feel
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Express How You Feel

Let yourself feel any emotion that comes up. Many of them may be difficult -- denial, fear, anxiety, or anger. All are normal when you have a new MDS diagnosis. There’s no wrong way to feel, and it’s important to give yourself the time you need to think through what your diagnosis means and process these feelings along with other important people in your life.

Empower Yourself
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Empower Yourself

When you have MDS, it may help to decide that you’re going to live your life to the fullest. You can lead an active and fulfilling life with MDS. If your condition makes activities you’ve done in the past more difficult, this is a good time to reinvent yourself. Try something new that you haven’t done before.

Pay attention
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Pay attention

MDS doesn’t only affect your body. It also impacts your mind and spirit. To care for yourself, pay attention to how your body feels. Be aware also of what’s on your mind and how you’re doing emotionally. Your mental and emotional health will affect your physical health. Attention and self-care will help you feel better in many areas of your life.

Clear Your Mind: Get Organized 
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Clear Your Mind: Get Organized 

After a diagnosis of MDS, you may find you’re overwhelmed with your emotions and all that you have to learn and do. Take time to organize your medical records and any medications you’re taking along with any new information you’ve received. Write down your questions, thoughts, and concerns so that you’ll remember to talk them through with your doctor.

Ask for Help
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Ask for Help

Ask questions of your care team so that you know what treatment you need and your treatment goals. Ask what to expect during treatment as well. Understanding the goals will help you prepare for what’s to come. You’ll be better able to plan other activities around your treatment. It will also make it easier to see where you may need help so you can ask for it in advance.

Protect Yourself From Infections
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Protect Yourself From Infections

MDS may come with a range of symptoms. One of them is a drop in the number of white blood cells that help fight infections. Take steps to keep yourself well. This includes washing your hands often, avoiding people who are sick and crowded places, preparing food safely, and staying up to date on vaccines.

Stay Active
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Stay Active

The benefits of exercise don’t change when you have MDS. It’s always a good idea to check with your doctor before you start a new exercise routine. If they say it’s OK, try to get out each day for a brisk walk. Build up over time to 30 to 60 minutes of moderate or more vigorous activity. Limit the amount of time you spend sitting down as much as you can. If it gets hard to exercise, talk to your doctor – it could be a sign of anemia. 

Fight Fatigue
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Fight Fatigue

Most people -- up to 9 out of 10 -- with MDS have lasting fatigue. And that doesn’t just mean you’re tired. It doesn’t go away with a good night’s rest. Don’t hesitate to let your doctor know if this is a struggle for you. Ask for help in sorting out the source: Are you sleeping well? Are you active enough? Do you have pain or feelings of depression, or anxiety? All of these may make fatigue worse. 

Fatigue-Fighting Tips
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Fatigue-Fighting Tips

To tackle fatigue, try these tips:

  • Get as much rest as you can.
  • Pace yourself -- do activities when you feel your best and delegate when possible.
  • Exercise -- some activity when you feel up to it can boost your energy.
  • Manage any other health conditions.
  • Be flexible -- be ready to change plans if you’re not up to something.
  • Avoid big meals and alcohol.
  • Ask your doctor if medicine might help.
Eat Well 
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Eat Well 

Healthy eating is a good idea for everyone, but it’s extra important when you have MDS. Good nutrition can help with side effects and fatigue. Focus on a diet rich in fruits, vegetables, and whole grains. Stay away from packaged and processed food. If you have a low white cell count, also called neutropenia, ask your doctor about how to avoid foodborne illnesses.

Complementary and Alternative Approaches
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Complementary and Alternative Approaches

You may find other approaches to wellness helpful to cope with your feelings and find sources for optimism and hope. While some alternative methods may not have a lot of evidence behind them, they may be safe to try. Talk to your doctor first.

Alternative therapies that you might try include:

  • Yoga 
  • Tai chi
  • Deep breathing
  • Meditation
  • Acupuncture
  • Massage 
Get the Time You Need
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Get the Time You Need

If you are working through your diagnosis or treatment, ask your employer for the support and time that you need now. You may need a more flexible schedule or time off. If you work for an employer with at least 15 employees, the Americans with Disabilities Act says they’ll need to provide you with “reasonable accommodations.” Learn your company’s policies and talk to your supervisor or HR representative to make a plan.  

Join a Support Group
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Join a Support Group

When you have MDS or any chronic illness, it often helps to connect with others who are in the same position. Other people with MDS can help you navigate your diagnosis and the decisions ahead. They can help you feel less alone. Ask your doctor if they know of a group in your area. The Myelodysplastic Syndromes Foundation has support groups in many areas.

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The Aplastic Anemia and MDS International Foundation: “Caring for Yourself,”
“Complementary and Alternative Therapies,” “Nutrition,” “Fatigue.”

MDS Foundation: “Building Blocks for Hope: Strategies for Patients & Caregivers Living with MDS,” “Global Patient Support Groups.”

National Cancer Institute: “Emotions and Cancer.”

American Cancer Society: “Living as a Myelodysplastic Syndrome Survivor,” “What Are Myelodysplastic Syndromes?”

Mayo Clinic Health System: “8 tips for coping with a serious diagnosis.”

American Society of Clinical Oncology: “Going to Work During and After Cancer.”