MDS Diagnosis and Embracing Your Emotions

Hearing the words “you have myelodysplastic syndromes” (MDS) can feel like the room tilts sideways.
Suddenly you’re juggling strange new terms, test results, and very human emotions like fear, anger,
and confusion. On top of that, people are telling you to “stay positive,” which is not exactly helpful
when you’re still trying to spell “myelodysplastic.”

If this is where you are right now, take a breath. This guide will walk you through what an MDS diagnosis
usually involves, what those lab reports and risk scores are trying to say, and, most importantly, how to
embrace your emotions instead of fighting them. You can’t control every number on a lab sheet, but you can
learn to care for your mind and heart while your team cares for your bone marrow.

What Is MDS, in Plain Language?

Myelodysplastic syndromes (MDS) are a group of blood and bone marrow disorders. In a healthy body, your
bone marrow works like a busy factory, constantly producing red blood cells, white blood cells, and platelets.
With MDS, that factory is still running, but it’s making too many “misprinted” cells that don’t mature properly
or don’t work well.

Over time, this can lead to:

• Low red blood cells (anemia) – causing fatigue, weakness, shortness of breath.
• Low white blood cells (neutropenia) – leading to more frequent or serious infections.
• Low platelets (thrombocytopenia) – causing easy bruising, nosebleeds, or prolonged bleeding.

MDS can range from very mild (where it’s watched closely for years) to more aggressive forms that may progress
to acute myeloid leukemia (AML). The good news: advances in testing and treatments now allow doctors to tailor
care based on your specific type and risk level, rather than treating everyone the same.

How MDS Is Diagnosed: From First Clues to Clear Answers

It Often Starts with Subtle Symptoms (or No Symptoms at All)

Many people with MDS first discover something is wrong after a routine blood test, such as an annual physical
or pre-surgery lab work. Others see a doctor because they’re feeling unusually tired, are getting more
infections than usual, or notice unexplained bruises.

Your doctor will usually start with:

• Medical history and physical exam – to look for other reasons for low blood counts, such as
  medications, vitamin deficiencies, recent infections, or other chronic conditions.
• Complete blood count (CBC) – to measure levels of red cells, white cells, and platelets, and
  look for patterns of “cytopenias” (low counts).
• Peripheral blood smear – a closer look at how your blood cells appear under a microscope,
  checking for abnormal shapes or sizes.

If these tests suggest that bone marrow function is off, your doctor will likely recommend the key test that
confirms MDS.

The Bone Marrow Biopsy: The Gold-Standard Test

A bone marrow aspiration and biopsy is usually done from the back of your hip bone. Local
numbing medicine is used, and while people often describe it as uncomfortable or briefly painful, the procedure
is usually quick. It provides the most important information for diagnosing MDS.

In the lab, specialists will:

• Examine how many immature cells (“blasts”) are in your marrow.
• Look for abnormal features in the developing blood cells (“dysplasia”).
• Run cytogenetic tests to check for chromosome changes that are common in MDS.
• Sometimes perform molecular tests to look for specific gene mutations.

The results from your blood counts, bone marrow exam, and genetic tests all come together to confirm whether
you have MDS and, if so, what type.

Other Tests That May Be Part of the Workup

Depending on your situation, your healthcare team may also order:

• Vitamin level tests (like B12 or folate) to rule out other causes of anemia.
• Kidney and liver function tests to get an overall health picture.
• Infection screening if recurrent infections have been an issue.
• Imaging tests if there are specific symptoms, such as enlarged spleen or lung issues.

None of these tests alone define you. They’re tools that help your team understand what’s going on inside your
bone marrow so they can design the best plan for you.

Understanding MDS Risk Scores Without Letting Them Define You

Once MDS is diagnosed, many doctors use risk scoring systems such as the
Revised International Prognostic Scoring System (IPSS-R). These tools group patients into
categories like very low, low, intermediate, high, or very high risk based on:

• The number and severity of low blood counts.
• The percentage of blasts in the bone marrow.
• The pattern of chromosome changes found in marrow cells.

Risk scores are designed to answer two big questions:

1. How likely is MDS to progress or transform into acute leukemia?
2. How urgently do we need to treat, and what options make the most sense?

Here’s the thing: risk scores are population tools, not personal crystal balls. They’re based on
large groups of patients and help guide decisions, but they cannot predict exactly what will happen to you.
Many people in higher-risk groups respond very well to treatment, and many in lower-risk groups live full,
active lives for years with careful monitoring.

It’s completely normal to feel nervous when you hear the word “risk.” If you can, ask your hematologist to
translate the numbers into everyday language: “What does this score mean for me in the next few months?”
and “What are we planning to do about it?” The more you understand, the less power the unknown has over you.

The Emotional Whirlwind After an MDS Diagnosis

MDS affects your blood, but the diagnosis lands squarely in your emotional life. People often describe their
first weeks or months after diagnosis as a roller coaster:

• Shock or numbness – “This can’t be happening.”
• Fear and anxiety – “What does this mean for my future and my family?”
• Anger – “Why me? I did everything right.”
• Sadness or grief – mourning the loss of your old sense of health and certainty.
• Guilt – wondering if you could have prevented it (spoiler: you probably couldn’t).
• Even relief – finally having a name and a plan after months or years of unexplained symptoms.

All of these reactions are normal. There is no “right” way to feel about an MDS diagnosis. Emotions can show
up in waves: you might feel okay one day, then overwhelmed the next for no obvious reason. That doesn’t mean
you’re “failing” at coping; it means you’re human.

Why Your Feelings Make Sense

MDS is not a household-name condition. That lack of familiarity alone can fuel anxiety: people around you might
respond with blank stares or Google panic. On top of that, some people with MDS are put on “watchful waiting”
(active monitoring without immediate treatment). While medically appropriate, being told “you’re sick, but we’re
not treating you yet” can be emotionally confusing.

Add to that the stress of repeated blood tests, possible transfusions, or talk of complex treatments like stem
cell transplant, and you have a recipe for serious emotional load. Recognizing that your feelings are a logical
response to a tough situation can be the first step toward treating yourself more kindly.

Healthy Ways to Embrace and Work Through Your Emotions

1. Name What You’re Feeling

It sounds simple, but putting words to your emotions can lower their intensity. Instead of “I’m losing it,” try
“I’m feeling scared and overwhelmed right now.” Naming feelings activates the thinking parts of your brain, which
helps you respond instead of react.

You can try:

• Writing down three words that describe how you feel each morning.
• Sharing those words with a trusted friend or partner.
• Using them to guide what you need today (rest, information, distraction, company, quiet).

2. Give Yourself Permission Not to Be “Positive” 24/7

Toxic positivity – the idea that you must “just stay positive” – can make people with MDS feel like they’re
doing cancer wrong. Real positivity isn’t pretending everything is fine. It’s acknowledging what’s hard while
still looking for reasons to hope, laugh, or move forward.

You’re allowed to say, “I’m scared, and I’m still showing up for this appointment.” Both can be true at the same time.

3. Try Practical Coping Skills You Can Use Anywhere

A few simple tools can help you ride out rough emotional waves, especially before appointments or while waiting
for results:

• Grounding breaths: Breathe in through your nose for four counts, hold for four, exhale
  through your mouth for six. Repeat for a minute or two.
• Five-senses reset: Notice five things you can see, four you can touch, three you can hear,
  two you can smell, and one you can taste. It brings your mind back to the present.
• Worry “office hours”: Set aside 15 minutes a day for worry. Jot down fears, questions, and
  what-if scenarios. When worries pop up at other times, tell them, “I’ll see you at 7 p.m.”

4. Watch for Signs You Might Need Extra Mental Health Support

It’s time to talk with a mental health professional (such as a psychologist, counselor, or psychiatrist) if you notice:

• Persistent sadness or hopelessness most days for more than two weeks.
• Loss of interest in activities you usually enjoy.
• Severe anxiety, panic attacks, or constant racing thoughts.
• Changes in sleep or appetite that interfere with daily life.
• Thoughts that life is not worth living, or thoughts of self-harm.

Reaching out is a sign of strength, not failure. Many cancer centers have social workers, psychologists, or
psychiatrists on the team specifically to support people facing diagnoses like MDS.

Building Your MDS Support Team

MDS is too big to carry alone. Think of your support team as a circle around you, with different people playing
different roles:

• Your healthcare team – hematologist/oncologist, nurses, primary care provider, possibly a
  transplant specialist and palliative care team. They help manage your disease and symptoms.
• Family and friends – the people who drive you to appointments, sit with you during infusions,
  or send goofy memes when you need a laugh.
• Professional supporters – oncology social workers, therapists, chaplains, and patient navigators
  who can help with emotional, practical, and spiritual concerns.
• Peer support groups – in-person or online communities where people living with MDS share
  experiences, questions, and encouragement.

If you’re not sure where to start, ask your clinic if they know of MDS-specific support groups or reputable
organizations that offer helplines, educational materials, and patient-to-patient programs. Connecting with
people who “get it” can reduce loneliness and offer real-world tips for navigating everyday life with MDS.

Having Better Conversations with Your Healthcare Team

Medical appointments can feel like speed dates with a lot more lab work. To make the most of your limited time:

• Bring a written list of questions. Keep a running list in your phone so you don’t forget in the moment.
• Ask for plain language. It’s okay to say, “Can you explain that in simpler terms?” or
  “What does that mean for my day-to-day life?”
• Bring a support person. A friend or family member can take notes, ask questions, and help
  you remember what was said.
• Clarify next steps. Before you leave, ask: “What are the next tests?”, “When will I get results?”,
  and “Who do I call if something changes?”
• Consider a second opinion. Especially for major decisions like stem cell transplant, getting a
  second opinion from a center experienced with MDS can be very helpful.

You are not “being difficult” by asking questions. You are a key member of your care team, and you deserve to understand
what’s happening and why.

Living Well with MDS Day to Day

While your medical team focuses on blood counts and treatment plans, your everyday life matters just as much. You may not
control the diagnosis, but you can influence how you live with it.

• Follow your treatment and monitoring plan. Keep appointments, take medications as prescribed, and
  report new symptoms promptly.
• Protect your energy. Fatigue is common with MDS. Prioritize what matters most and say no to things
  that drain you without adding value.
• Support your body. Nourishing food, gentle movement (as recommended by your doctor), and sleep
  routines can improve how you feel day to day.
• Keep joy on the calendar. Plan small, pleasant activitiescoffee with a friend, a favorite show,
  a short walk, a creative hobby. Joy is not a luxury; it’s fuel.

Living with MDS is a long game for many people. Think of your emotional health as a recurring line item in your
care plan, not a side project.

Real-Life Experiences: You Are Not the Only One

Every MDS story is unique, but certain themes show up again and again. The following composite examples are based on
real patient experiences, with details changed to protect privacy. You might see parts of yourself in themor they
may help you better understand a loved one with MDS.

Maria, 62: From “Total Shock” to Informed Advocate

Maria went to her primary care doctor because she was exhausted all the time. She assumed it was age or stress.
When blood tests showed low counts, she was referred to a hematologist, who eventually diagnosed MDS. The word
“syndrome” alone terrified her. She spent sleepless nights reading worst-case scenarios online.

Her turning point came when a nurse suggested she write down all her questions and bring them to her next visit.
Maria walked in with a notebook full of scribbles: What does my risk score mean? Do I need treatment now? What can
I still do safely? Her doctor walked through each question step by step and emphasized that Maria’s MDS was currently
low risk and would be monitored closely.

Emotionally, Maria still has anxious days. But now she channels that energy into action: organizing her labs in a
binder, attending an online MDS support group once a month, and sharing what she’s learned with her adult children.
“Information doesn’t erase the fear,” she says, “but it keeps my fear from making up its own scary story.”

James, 45: Balancing Work, Family, and “Watchful Waiting”

James is a father of two who was diagnosed with MDS after a long stretch of infections and unexplained bruises.
His counts were low, but his team recommended watchful waiting with supportive care rather than immediate aggressive
treatment. On paper, this was reasonable. Emotionally, it felt like sitting on a time bomb.

At first, James tried to push down his feelings and “just focus on work.” This backfiredhe became irritable with
coworkers and snapped at his kids over small things. Eventually, his partner gently pointed out that he seemed more
angry than himself.

James decided to meet with an oncology social worker. Together, they created a simple plan:

• Schedule therapy sessions around blood draw days, when anxiety peaks.
• Practice a five-minute breathing exercise in his car before walking into appointments.
• Tell his kids, in age-appropriate language, that “Dad has a blood condition the doctors are watching closely.”

Over time, James learned that “watchful waiting” didn’t mean “doing nothing.” It meant active monitoring, plus
ongoing work on his mental health, parenting, and career boundaries. Today he says, “I still get scared, but I no
longer feel like I’m waiting for disaster. I’m living my life, with MDS as something I manage, not something that
manages me.”

Lena, 70: Facing High-Risk MDS and Finding Emotional Anchors

Lena’s diagnosis was different. Her bone marrow results showed higher-risk MDS, and her team quickly began talking
about stronger treatments and a possible stem cell transplant. It felt like going from zero to one hundred overnight.

Lena describes her emotions as “a storm I couldn’t outrun.” She worried about side effects, hospital stays, and
whether she would see her grandchild graduate. She also felt guilty that her adult children were rearranging their
lives to help with her care.

With encouragement from her doctor, Lena joined a support group where several members had already gone through
transplant or intensive therapy. Hearing their stories didn’t magically make her brave, but it gave her something
solid to hold ontoreal people, living real lives, after treatments she was still dreading.

Lena started a small ritual: before each appointment, she wrote down one fear and one hope on a sticky note and
tucked it into her bag. The fear reminded her that her emotions were valid. The hope reminded her why she was
saying yes to hard things. “I learned that courage isn’t feeling fearless,” she says. “It’s showing up even when
you’re terrified, and letting people help you.”

Bringing It All Together

An MDS diagnosis affects more than your blood counts. It touches your routines, relationships, and sense of who
you are. You may not have chosen this path, but you can choose how you walk it: informed, supported, and kinder
to yourself than you’ve ever been.

Ask questions. Build your team. Let yourself feel what you feel, then reach for tools and people who help you
carry it. MDS is one part of your storynot the whole book.

Important: This article is for education only and is not a substitute for personal medical advice.
Always talk with your healthcare team about your specific diagnosis, test results, and treatment options.