Coping with Myeloma: Insights from a Social Worker (https://www.myeloma.org/blog/coping-myeloma-insights-social-worker)
Coping with Myeloma: Insights from a Social Worker
The IMF's Associate Director of Support Groups, Katie Atkins, MSW, LCSW, LCAS, CCS, OSW-C, led a session on "The Unseen Impact of Myeloma" on March 13, 2026, at the IMF Patient & Family Seminar in Boca Raton, Florida.
Katie focused this session on a patient's emotional health, or feelings, while living with multiple myeloma. She pointed out that discussions about myeloma often focus on how the disease affects the body.
Katie clarified that her presentation is to support learning and conversations with an individual's healthcare team, including a therapist or doctor. Her talk was/is not intended to provide medical advice.
The following is a summary of Katie's talk: (EDITOR'S NOTE: Katie Atkins' points have been edited for conciseness and clarity.)
Emotional Support for Myeloma Patients
We're looking at myeloma through the lens of physical symptoms, treatments, lab values, survival rates, that kind of thing. But beneath all of that is a profound emotional impact—an emotional battle—that affects not only every patient, but everyone who loves you.
This part of this journey can be just as complex and challenging as the disease itself.
I have heard from many patients that getting this diagnosis really knocks the wind out of them. They feel shocked initially, which is followed by a range of emotions. And those might include grief, sadness, fear, disbelief, worry, anxiety, depression, anger, confusion, and even an existential crisis.
On the flip side, if you had complicated symptoms at first, and you're doing lots of treatments and/or lab tests to try to figure out what's going on with you, you might have a sense of relief or comfort knowing, 'Okay, this is what this is. There's a plan here.'
But I like to reinforce and reiterate that there is no right or wrong way to feel about any of this. Every feeling that you might experience is very normal.
The First Reaction to a Cancer Diagnosis Is Often Shock
Your first reaction to a diagnosis may be one of shock. A lot of folks feel disbelief, surrealism, and are unable to grasp the weight of this news. Some people feel confused or disconnected, like this is happening to someone else, or you're outside your body, watching this happen. Things that you might have worried about yesterday, like emails or car trouble or chores, really shrink in importance.
After the Initial Shock, More Questions Arise for Myeloma Patients
And in their place, new and scary questions might arise:
- How much time do I have left?
- Am I going to suffer?
- Who am I going to leave behind?
- "Denial," which I put in quotes. I think that there's a lot of stigma to that word, but it's a very normal part of the grief process.
- Anger happens to all of us. I know we have a lot of resistance to this emotion, but it is very real and very normal. It's also a completely normal response to trauma. This is another stage of grief. If we think about Elisabeth Kübler-Ross (https://www.ekrfoundation.org/5-stages-of-grief/5-stages-grief/), for instance, in her stages of grief, this is an important one. Anger is normal. Some might feel anger towards their doctors or healthcare team. Some may feel angry towards themselves in the form of guilt or regret. Even though, as IMF Medical Advisor Dr. Joseph Mikhael said, we often don't know what caused this. There's still guilt around. Maybe it is about the life we've lived or the decisions we've made. And then a lot of folks feel angry at God and feel feelings of unfairness. Many ask, "What did I do to deserve this?"
All these feelings are normal. It's also normal and common for us to take our anger out on the people that we love the most. I've heard many, many people describe—and certainly dexamethasone (https://www.myeloma.org/dexamethasone-side-effects)doesn't help this—feeling edgy, irritable, and cranky. And again, that's a normal response to trauma.
It's important to understand, though, that anger can impede the way that we communicate our other emotions to our friends and family members. So, if you see anger really taking control of your life, we advise you to seek help from a therapist or counseling professional.
It is important to note that anger is often experienced as a secondary emotion to fear or hurt. And I think when we place it in that kind of context, coming from emotional pain or fear about the future, it is completely normal that you're feeling anger in there because of a diagnosis of myeloma. This is a very scary time.
Fear and Worry Are Natural
Fear and worry are also very common and very normal. Some of you may fear death and dying and what that process might look like. Myeloma really personalizes death. As I've worked with cancer patients, they've explained that nothing really makes us face our mortality like a diagnosis of cancer does.
Our bodies were maybe once taken for granted, but they can begin to feel very vulnerable. There's the fear of physical pain, the fear of treatment, the fear if the treatment is going to work, or the fear that you may have a recurrence.
Some may also experience fear of rejection and loneliness. I know that, certainly, especially at the beginning of a diagnosis, that can feel very isolating. That's why I'm so glad to work with these wonderful support group leaders (https://www.myeloma.org/support-groups) that welcome you all with open arms. We know what this is like, and we aim to keep you surrounded and supported.
There are certainly worries about prognosis, the future, how relationships might change, and that kind of thing. And then practical worries—finances, work, school, housing, careers—all those things begin to come into question.
How Do You Experience Grief When Living with Myeloma?
Grieving shifts in identity is something I hear a lot about too. And I think it's important to recognize and acknowledge. There are certainly a lot of losses with cancer. These could be our hair, our energy, and our independence. Plans feel uncertain. You might start to grieve the loss of your old self or the future you expected for yourself, and that can really strip away our sense of normalcy and identity.
Those are huge losses for us as people. People may feel really isolated and withdrawn from social activities and some relationships they have, whether that's friends or coworkers. Yet it might even be due to physical limitations from the illness. And then for some, there's a deep sadness related to the loss of the life they expected for themselves.
I also want to say that, again, with ongoing research (https://www.myeloma.org/our-research), folks are living a really long time, and we have a lot of reasons to be hopeful. But it is a scary time. When we think about changes in our lives—the loss of independence and routine—it may be demoralizing and defeating. Those are heavy feelings that are worth sitting with.
Your Relationships May Change Once You Have Myeloma
Cancer can significantly impact our relationships with partners, family members, friends, and coworkers. Open communication and finding support from people that you trust is important. And maybe that's not every single person. I don't expect you to tell everybody about your journey.
I think that we all owe it to ourselves to be discerning about who we share this with. But finding someone you trust is important. And recognizing, too, that we have different people in our lives that meet different needs. And maybe that is a therapist, good friends in your support group, siblings, or a partner.
Seeking support where you need it is important. You need somebody to talk with and unload to. And some people might not know how to offer support. I have seen, sadly, that lots of friendships have changed or ended because people are uncomfortable with myeloma and don't know what to say about it.
Finding people that you need and that need you back is essential. I've also heard from a lot of folks that when you share this news with people, you might feel like you have to comfort them. And that's certainly not a place I want any of you to be in.
These emotional challenges may also be experienced by the people you love, like your partner or care partners. They experience this emotional exhaustion, guilt, and helplessness, too. That's why we have a Care-Partners-Only Support Group (https://www.myeloma.org/support-group/care-partner) just for this coMMunity.
When Myeloma Brings on Mental Health Issues
The Diagnostic and Statistical Manual (DSM), the fifth edition (https://www.psychiatry.org/psychiatrists/practice/dsm/educational-resources/dsm-5-tr-fact-sheets), or fifth volume, is a thick book used by psychiatrists, physicians, and clinical therapists to diagnose mental health and behavioral health disorders. You might have heard of this. You might have even been diagnosed with something yourself.
Coping with Cancer Anxiety
The DSM diagnoses anxiety or characterizes anxiety with the following symptoms:
- Ruminating about a specific fear or worrying so much that you're unable to think about anything else.
- Sleep disturbance. This can be trouble falling asleep, staying asleep, or both. You may find that you're up all night unable to sleep, but then you're so exhausted that you sleep all day feeling restless or edgy.
- Irritability and anger may be related to anxiety. It's not uncommon to be snappy or just feel like you have a much lower threshold for stress than you used to.
- You may find yourself being easily fatigued or overstimulated. Finding that being in a room with too much noise or too much going on may just push you over the edge.
- Difficulty concentrating and forgetfulness. A lot of us like to blame this on chemo brain, but this is very much also a part of anxiety and depression. I also like to note that anxiety can also present like ADHD, which is attention deficit hyperactivity disorder (https://www.nimh.nih.gov/health/publications/attention-deficit-hyperactivity-disorder-what-you-need-to-know).
If you find yourself with these symptoms and think something just isn't right, please seek out professional help. They can help you really characterize what's going on and help treat you. If anxiety or ADHD symptoms are disrupting your daily life—affecting your productivity or relationships—we encourage you to seek help.
Understanding the Symptoms of Major Depressive Disorder
The DSM 5 also defines major depressive disorder (https://pubmed.ncbi.nlm.nih.gov/37620370/)as a mood disorder. It presents with the following:
- persistent sadness
- sleep disturbances, such as insomnia or sleeping too much
- anhedonia, or the loss of interest or pleasure in activities that used to feel exciting
- feelings of guilt or worthlessness
- crying spells
- changes in energy or excessive fatigue
Depression is tricky with myeloma treatment because sometimes we're going to expect this. We may expect that you don't have energy or that you don't want to get out of bed. Yet, if you're finding that you're frequently feeling completely unmotivated to do things that you used to love to do and such, like it's not worth getting out of bed, that's a concern.
Appetite and weight changes. These changes may include wanting to eat a lot or not wanting to eat at all. If you're seeing big shifts in weight, please just recognize that that could be related to your mental and emotional well-being.
Psychomotor disturbance. This means moving more slowly and even speaking more slowly than you're used to. If your nervous system just doesn't feel like it's cooperating with your brain, that's concerning.
Certainly, a huge part of this is suicidal thoughts (https://www.nimh.nih.gov/health/publications/suicide-faq). And if you're ever considering a plan to hurt or harm yourself, or just that you wish to go to sleep and not wake up in the morning, this is a major, major concern. We recognize that. We want you to recognize that. Please seek help. It's also worth noting that chronic and terminal illness is a major risk factor for suicide. Please recognize that, and please reach out for help.
Recognizing and Sitting with Your Feelings
Feelings are not mutually exclusive. Accept your feelings without judgment. As I said before, there's no right or wrong way to feel. When we label a feeling as wrong, we're really doing a disservice to ourselves. Because not only do we not want to feel that, but we also feel guilty about feeling it. That's not worth doing.
It's also important to recognize the impermanence of our emotions. Every sensation, every feeling is transient. And if we think of our emotions like the weather, that can be helpful: Not every day is going to be warm, sunny, and breezy. We're going to have days of blizzards or thunderstorms or lots of wind, and that's okay. That's part of being human, and it's not going to last forever.
Stay curious about your emotions. Ask questions about what triggered something. Know when to predict changes or shifts in your emotions. Think about how you can protect yourself ahead of time.
Then, let go of the need for control. Try to accept what is without judgment. I used to have a quote hanging in my old office said, "If you want it to stop hurting, you have to let it hurt."
That's really powerful to me. Fighting our emotions does not help us. I like to remind folks that you don't have to be strong or fight off feeling weak or sad. It's okay to feel tired, lonely, anxious, depressed, or angry. Acknowledge your feelings.
If you want to cry, do it. Being a human is hard, and crying is naturally cathartic. I think it shows a lot of strength to be vulnerable in that way. And if any of you are familiar with Brené Brown (https://brenebrown.co), she is a doctorate-level social worker who does a lot of qualitative research about emotion, specifically vulnerability and courage. She notes that to be vulnerable, to cry, to recognize what we're experiencing is courageous and brave.
I love this quote, and I think it just really demonstrates the complexity of our emotions. And again, they're not mutually exclusive. "The work of the mature person is to carry grief in one hand and gratitude in the other, and to be stretched large by them. How much sorrow can I hold? That's how much gratitude I can give. If I carry only grief, I'll bend toward cynicism and despair. If I have only gratitude, I'll become saccharine and won't develop much compassion for other people's suffering. Grief keeps the heart fluid and soft, which helps make compassion possible."
How You Can Learn More About Managing Your Emotional and Mental Well-Being
Katie periodically speaks at IMF Patient & Family Seminars (https://www.myeloma.org/resources-support/imf-support-network/patient-family-seminars) and Myeloma Community Workshops (https://www.myeloma.org/resources-support/imf-support-network/myeloma-community-workshops). The above blog is a glimpse into Katie's insights on mental and emotional health when living with myeloma. We encourage you to attend her sessions during our Seminars and/or Workshops, where she shares tools such as grounding techniques, mindfulness/relaxation ideas (https://www.myeloma.org/mind-body-wellness), and even mindful eating tips (https://www.myeloma.org/diet-and-nutrition).
Furthermore, here is a list of patient resources curated by Katie that may be helpful to you:
CaringBridge (https://www.caringbridge.org/resources)
Psychology Today (https://www.psychologytoday.com/us)
National Alliance on Mental Illness (NAMI) (https://www.nami.org/)
CanCare (https://www.cancare.org/types-of-support)
Emotions and Cancer - NCI (https://www.cancer.gov/about-cancer/coping/feelings)
Cancer | Support Groups, Counseling, Education & Financial Assistance (https://www.cancercare.org/)