The Unseen Impact of Myeloma: Coping with Fear, Anxiety, Grief & Your Emotional Health

Yara William:
Hello everyone. So my name is Yara William, and I'm going to talk to you about the unseen impact of myeloma, taking care of your emotional health. And this is a topic that is going to be a little bit shortened for today. We have a longer version that we've presented at the regional support groups. And so if you have questions or want more information, please do reach out to us or connect with a support group.
So just as a disclaimer, the International Myeloma Foundation Support Group team, we present this information for informational purposes. The intent is to provide the information, not take away from the medical and care advice from your care team. What we're going to cover today, so we'll talk about the common emotional responses, the range of emotions that you may experience with a myeloma diagnosis, as well as through the entire experience to treatment, recovery, relapse.
And we'll also talk about coping with those emotions. And with that, we'll talk about different techniques, coping and grounding techniques and exercises, as well as when and where to seek support and help. And we'll close with some wellness tips and resources. And then if you do have questions, we'll have a Q&A panel in a bit.
So we'll start with our emotional responses. Myeloma is often seen through the lens of the physical part of the experience. But underneath all of that, there's also the emotional impact. And that is something that weaves through the entire experience from diagnosis to treatment. And the emotional impact of myeloma, it can be just as complex and challenging as the physical aspect. And not only does it affect you individually, but it also could affect family members, colleagues, your loved ones, and your network.
So there's a quote here, "Getting a diagnosis of cancer can feel like getting the wind knocked out of you." And with that initial shock, there's a lot of emotions that we're experiencing and moving through. Some of those could be grief, sadness, anger, confusion. There could be questions, not knowing what to expect or where to go from here. And that anxiety and that worry can be really overwhelming.
On the flip side though, if your pre-diagnosis journey was especially challenging, then having a diagnosis can give you a sense of relief, being able to name what it is that you are going through and having a plan of action. And so there's a lot of different emotions that one may experience. And I think the main message that we want to have here today is that there's no right or wrong way to feel. There's no good or bad emotion.
Some may feel numbness and a sense of surrealism after the cancer diagnosis, and not being able to fully carry that weight of the news and of the changes that would come with it. There could be confusion and disbelief that this is happening to me and my family and what do I do from here? There's also the disconnection. There could be a sense of detachment, feeling like you're watching it happen to somebody else. And that in and of itself could be a coping mechanism. So being able to recognize that and name it is part of the process.
And denial, why is this happening to me? Is this real? What do I do from here? And with that, there's questions that may come up. Will I be able to live the life that I had envisioned and what's next for me? Anger is a very normal response to a cancer diagnosis. And what's important to recognize about anger is that it often stems from something deeper, fear or worry. And so anger is a secondary response to that fear or worry that you may feel. Some may have anger toward family members, some may have anger toward their healthcare team, their doctors. And oftentimes those closest to us will be the ones that are on the receptive side of that anger. But again, if we start to remember that this is coming from a place of fear, or this is coming from a place of worry, and this is how I'm responding to it, then we're able to take control of that anger.
And anger is also a very common response to trauma. And a cancer diagnosis and the experience is a form of trauma. And so being able to understand that anger could affect how we communicate and impede our ability to communicate our needs. Once we're able to recognize that, and if needed, seeking help to work through that, then we can really start to seek the support and the love and the resources from those around us.
Many patients will often say that they have a sense of fear and worry throughout the cancer diagnosis and treatment and living with multiple myeloma. That fear could be about death and dying. Cancer makes the possibility of death very real and personal. And so we'll come to face that through this. Fear of pain and the treatment, that could be will the treatment work for me? Will it hurt? What will it be like?
Fear of rejection and loneliness. Something that we notice is that, with any sort of diagnosis, changes in relationships happen. And so with those changes in relationships, it could be loss of those relationships or the type of relationship before the diagnosis. And fear about the future. We all envision a certain future. And I had a conversation with someone earlier about how our perception of the future changes with a cancer diagnosis. We may need to do things a little bit differently than what we've done before, but that doesn't stop us from having a future. But with that there is fear about what will the future look like.
And then there's also practical worries. And it could be finances, housing, your career, especially if there's an interruption in your daily income. Having those worries and those fears are normal part of a cancer diagnosis. Cancer can take a lot from somebody. It can take away our energy. It can take away our independence, plans. It can take away our own sense of ourself and forces us to redefine who we are and what we hope to leave in this world.
Side effects are also a part of the grieving process. So hair loss, fatigue, all of these side effects affect our ability to cope with the cancer diagnosis. And some people will feel isolated. They may withdraw from social activities, from career, from friends, from coworkers, and it's due to limitations or the emotional distress that they're feeling. So the loss of independence and the routine that one had at some point can be demoralizing and defeating. And then for others, there's this deep sense of sadness and the loss of life that they expected for themselves, for those around them.
And I want to validate that, again, all of these emotions are normal, and that, as Dr. Joe spoke about, there is hope. There's hope for the treatments, there's hope for quality of life. And so being able to hold onto that hope and coming into community together is something that we feel very passionate about and being able to share that hope.
So when we think about the relationships of those that are sitting next to you, partners, family members that are here with you, the cancer can impact the relationships with those individuals. And being able to recognize that and have open communication and to have the emotional support is critical for your journey. And finding someone that you can trust and talk to is also helpful. And it could be somebody, it depends on the relationships. What a partner may be able to offer is different from what a friend or a colleague could offer. And so finding what you need, and being able to call on those around you, your network, your support group, to help provide that support and that safe space for those emotions is helpful throughout the process.
Sometimes the diagnosis could also be compounded by the reaction of others. So with sharing a cancer diagnosis, and going through treatment, some may pull away and you may find yourself needing to comfort others and having to carry that as well. So being able to recognize that and realize that your role will also shift a bit. And at the same time, there could be some very deep connections that come out of this. And so for those that are part of a support group, for example, think about the relationships that you've built in the community that you've been able to build over time with those around you. And those relationships are deep and long lasting and they become, as we say at the IMF, family.
Other emotions or feelings that someone may feel are anxiety and depression. And both are very real and they may show up in different ways. So as of 2022, 23.1% of the US population met the criteria for a diagnosis of a mental health issue. Over 56% of adults living with blood cancer have experienced anxiety and depression. And so what's important is that while these statistics aren't quite measuring the same thing, we can see that more than half of the patients living with blood cancer do experience these emotions, these very real feelings. And being able to seek help when needed is important and also recognizing again that hope does exist.
And sometimes the help can come in different ways. So when we think about depression, we know that depression is very serious, and we do encourage everyone to take the symptoms seriously as well and seek help as you need it. Whether it's talking to somebody or working with your care team to find the type of medication or counseling or resources and support that's needed. There's also 988, which is a great resource. You can call or text the number if you ever have thoughts, not just about suicide, but also thoughts of mental health concerns and depression and anxiety and so on.
While we don't want to push positive toxicity, we do want to talk a bit about how there is some light that comes through this and being in this community together. So finding value in the challenge. Sometimes through suffering is where we find the most meaning and value for our lives, and that can come in a variety of different ways. It's never about suggesting that the illness itself is good, or that someone should suffer, but rather how can I take this experience that I have today and turn it into something that is impactful for my community, for my society, for those in my circle.
For those that do find meaning and purpose through this, it could show up as a greater appreciation for the small moments in our lives. It can be new and deepened spiritual beliefs, a sense of inner strength that we didn't know we had before, or increased empathy and patience. And so suffering forces confrontation with vulnerability and uncertainty. And some individuals engage or believe that this gives them a new worldview or a transformed worldview.
And while we may not have a cure and are working on a definition for a cure for myeloma, and the reality is that our bodies are not perfect and go through many changes, we can experience emotional or spiritual healing in the midst of this journey and this experience. And so I challenge everyone to consider what does healing mean for you? And it may be something different for different individuals, and that's okay.
We talked about how cancer can strip away our sense of control, but in that loss, we find a different agency. We get the opportunity, the chance, to choose how we spend our time and what does meaningful time mean to us. We're able to choose how we speak about this experience and the message that we wanted to carry. We choose how we meet uncertainty emotionally and spiritually. And so the struggle itself becomes a teacher of resilience.
Now how you take this and what you do with it can show up in a lot of different ways. It can show up as advocacy, which we'll talk about a little bit later. I like to think that we are all advocates in one way. You never know who might need to hear your story and you never know when you might need to share that with someone. Volunteering, and I thank our volunteer ambassadors that helped out today. It can show up as leading a support group and being able to provide that safe space for others. It could be helping someone that's newly diagnosed by talking to them, by sharing your story, letting them know that it's going to be okay.
So it's all about thinking about how can I take what I've been given and do something with it that is both fulfilling to myself and to those around me. So on your tables, you'll see there's a wheel in one of the handouts. And the second page, I think it is, might have this wheel, second or third page. But this is our emotions wheel. And when we're coping with heavy emotions or big feelings, it's important to be able to go through this process to really help us hold onto that.
The first thing is awareness, being aware of what the emotion is and the sensation that it causes your body. So if anxiety, for example, it can be accelerated heart rate or sweaty palms or a stomach ache. Depression could show up as feeling the need to cry or feeling sadness. And so being aware of that and recognizing this is how my body is reacting to this emotion, being able to next identify it. So name the emotion, what is it that I'm experiencing? If it's anger, is that anger coming from a place of fear? Is it coming from a place of worry? And then accepting. We often judge ourselves more than others will judge us. We're our own worst critic. So believing and knowing that all emotions are okay and being able to accept it in the moment and knowing that it will pass.
And then recognizing that emotions come and go. And so what you are feeling right now will end and it will move to another emotion. There are days where it's sunny outside and we feel great, and there are days where it's stormy. And so our feelings are like the weather. They change depending on what's happening and how we're thinking in our mindset for that moment. Staying curious as well. So asking yourself what is triggering this emotion? Where is it coming from? Once we're able to realize where it's coming from, then we can start to take care of it, address it, and protect those around us and ourselves.
And then lastly, letting go. Letting go of the emotion, allowing yourself to feel it and then letting go. And there's a quote that if you want something to stop hurting, you have to let it hurt. And we'll often feel that we have to be strong and have all the answers, but we don't. We don't have to be strong all the time. If you're tired, that's okay. If you're sad, that's okay. If you feel like crying, that's okay too. That can be very... Crying is catharsis and it's helpful. And so having that release is a part of the coping process.
I'm going to read this quote here by Frances Ward Weller. "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 towards cynicism and despair. If I have only gratitude, I'll become saccharin and won't develop much compassion for other people suffering. Grief keeps the heart fluid and soft, which helps makes compassion possible."
So we'll talk a little bit about coping techniques. And I have about five minutes, so I'll just touch on a few of them here. But these are ways to get out of the chaos that's in our head and focus on our senses and our body so that then we can be able to communicate what our needs are. The first one here is a five, four, three, two, one grounding exercise, and it really uses all five of your senses. And this can be done anywhere at any time, standing, sitting, laying down.
And the first one is five things that you can see, four things that you can touch, three things that you can hear, two that you can smell, and one thing that you can taste. And by focusing on each of these things, we really start to take ourselves out of the panic or the worry that we may be feeling and refocus on what we need to do.
Mindful walking is another one. And it's more than just going outside and enjoying our wonderful weather. It's really being intentional and present, recognizing what's around you. Listening and hearing the birds, the trees, the leaves, feeling your heels touch the ground and your balance. Four square breathing is a breathing exercise. And you breathe in, hold it for four seconds. So breathe in for four, hold it for four, release, exhale for four, and then hold for four. And you can do this as many times as you need to until you feel that calmness. Another is holding a piece of ice. Sensing that in your hand helps us get back into outside of the panic or the worry. And being intentional with everything that we do. So being intentional perhaps with something that you eat, and focusing on that can help us be more mindful and present.
So when and where to seek help? We're all human and we all need help sometimes. And when you unlock the door to allow help come through, you may be surprised by how much love and support just floods through. And so when you are able to open that door and accept the help that's out there, it can be overwhelming, but also overwhelming in a really beautiful way.
So think about what kind of help you might need. Are there practical needs, housekeeping, transportation, childcare? Is it financial help that you need, knowing where to go and what you're eligible for, or help with groceries? Or is it emotional support, being part of a support group, having someone to talk to, someone that you can unload with. Being in the presence with someone where you can share what you're feeling and what you're thinking without them trying to fix it, but just having that support there. If for any of these, you're not able to find it through friends or family or support groups, there are other resources out there. And so we encourage you to reach out to seek professional support that can help guide you through each of these different needs that you may need.
So now that we've talked a little bit about the different emotions, just want to reiterate that your emotional health and your wellbeing is just as important as your physical wellbeing. And the two go hand in hand. So being able to talk to your healthcare team about what you're feeling and what you need is a first step. And recognizing that this is part of your care. Part of your wellbeing is your emotional wellness as well.
Now you'll also notice on your table you have the belonging wheel. And as we talked about and you saw in the video, support groups are really a great way to find community and build relationships, lasting relationships, as well as get educational information, and increase your knowledge and your understanding of myeloma. But this is a place where you're included, you're welcomed, you're connected, accepted, you're involved, you're supported, you're heard, you're valued, you're seen, and you walk away with hope. And that is the goal of having a support system in place.
So some tips to promote emotional mental wellness in your life today. These are a number of different things, talking to friends and family, asking for help and being specific about what you need, whether it's practical, financial, emotional type of support, joining a support group. And we have almost every Southern California support group represented here today. Seeking and getting education and material about myeloma, taking time for yourself, and I'll mention too, for our care partners in the room. Your emotional health and wellbeing is important. And so being able to take care of yourself and taking that time. Spending time with supportive friends. And celebrating every victory. Whether it's small or big, just taking a moment to celebrate and recognize that.
So some resources, there's a lot of different resources out there, and finding which one is right for you takes a little bit of work. Being able to first take the step of recognizing that help may be needed, and talking to your care team about what's out there. So there are several online therapy platforms, there's Headway, BetterHelp, and Talkspace. And on the slides, these links, you'll be able to click on them and go to their sites. There's also CaringBridge, which is a great way to keep your family and loved ones, your network, up to date and aware of how you're doing. And then Psychology Today. And so if you are looking to get connected with a counselor or a therapist, this is a database that will help you narrow down your search engine. So you can search by your location, the type of support that you're looking for, and it'll help connect you to some of those resources.
And so if there are any questions, again, we'll have a panel later on today, but our email is up here. You can reach out to us anytime. And I think I only went over a minute, so thank you.