Finding Support During a Multiple Myeloma Diagnosis

As a part of its “Speaking Out” video series, on behalf of the International Myeloma Foundation, CURE® spoke with their vice president of support, Robin Tuohy about the importance of support for patients with multiple myeloma, and their caregivers.

Colleen Moretti: What does joining a support group entail for patients with multiple myeloma?

Robin Tuohy: So, it's not really joining a support group as there's no membership commitment or paperwork to fill out. It's really engaging and becoming part of a community that understands and can offer their shared experiences as well as the resources from the IMF (International Myeloma Foundation). So, it really is this easy to get engaged and empowered simply go to the International Myeloma Foundation's website, which is myeloma.org. And then if you're looking for a support group, you would click on resources in support, and then click on find a support group. See what's near you — we have about 150 groups all across the country. But then we also have what we're calling special interest groups that may focus on a topic that may be right for you. So, the IMF does create and maintain individual websites for each of these support groups where all the contact information and details are available. So, whatever the specifics are, for each group, you get to go directly to that group's resources right from the IMF website. So we really do try to keep it as easy as possible. And today as you know, groups are meeting in a variety of ways due to the pandemic, with most groups currently meeting virtually utilizing the Zoom platform that the IMF provides to them at no cost. Some of the groups are moving back to in person meetings, while others are doing what we're calling a hybrid meeting now with patients having the ability to choose if they prefer to attend in person or virtually. So whatever really works for each person.

Moretti: Why would or should a patient with multiple myeloma join a support group? What are the benefits of joining?

Tuohy: Sure, so quite simply, and I can tell you this is based on my own experience. My husband was diagnosed with multiple myeloma in the year 2000, so that's 22 years ago now. Based on what we learned, and in the beginning, Michael and I didn't feel the need to, complain or the context or the feeling of a support group is that people sit around and maybe complain or whine and for us, that's not what it was about. It was trying to find the best resources where to go, what to do, what doctors to see what questions to ask. And then we found the international myeloma Foundation's website, we learned from there, we ended up connecting with them and going to a few patient and family seminars. And we learned that support groups, really our education groups, and within six months of Michael's being diagnosed with myeloma, we decided that's for us — an educational group to find that information, and to get these answers that patients so desperately need, so we don't feel alone. So to me when I think about a support group, and why would you as a patient or a care partner join a support group? To me, it's the focus on how to live well with myeloma and talking about what is myeloma and sharing experiences to help better understand the myeloma journey, to have better conversations with your health care team, to see what may be the best for your myeloma. We've often joked that it's “myeloma”, but we all know that it's individual. So it can be our-loma when I'm thinking of Michael and I as a team. So really think about, because there's so many different treatment options and side effects and how to manage it, what's going to be best for you and those are the things you need to really talk with others about, listen to that, but then go back to your health care team to see how does this affect me? Is this important to me now or in my future?

And then I really truly feel that support groups empower patients and care partners with information and insight and hope — this hope is so important. And then the IMF provides educational guidance to this network of myeloma specific support groups all across the country, and we're happy to connect people with others that really are living the life. I think that talking together being together, whether it's a support group in a certain city, town or state, or again, whether it's a special interest group.

Moretti: Are there support groups available for the caregivers and family members who are also affected? What kind of support can they IMF offer them?

Tuohy: We really say the word care partners because I feel that we are partners. I am not a caregiver in that I'm giving, giving, giving mentally and physically to my husband. It's a roller coaster in the world of myeloma, but we are partners together in this and when we go to appointments, and we listen, and we have a conversation together sometimes we each hear different things. So we truly are partners together. And at the IMF, we always talk about who is on your team. And so of course the team comprises of our health care team, our doctors, our nurses, our myeloma specialists, our local hematologist oncologist and so all of us together, really create this best scenario so that we can partner together. So as far as supporting the care partners, their journey is parallel to the myeloma patient’s journey. So, when things aren't good for the myeloma patient, they're usually pretty good for the care partner. And so how do we control that ebb and flow of the ups and downs of the roller coaster when things are rough and when they're challenging compared to “Okay, life is pretty good right now.” And so we have to think about things like the care partners own health, are they taking the time to go to the doctors themselves to maintain their good health. Often we hear if you're on a plane, if there's turbulence and if that air comes down, you have to put that oxygen on yourself first, so you don't pass out so you have to take care of yourself before you can help others. Remembering to take that time to take care of yourself first, and then you could be at your best to take care of your loved ones.

And then also thinking about in the myeloma support groups, how are these care partners engaged and taken care of and heard. And in a support group, we call it a round table, everyone gets to go around and talk and share and that does lead care partners. But sometimes the support groups, maybe a couple of times a year or however often the group decides it's needed and necessary, will have separate breakout meetings for just the care partners because sometimes we find that we tend to want to protect our loved ones that might be the patient and maybe we're not being quite as open about what's on our plate. We don't want to stress them out with overburdening them with maybe what our stresses are, whether that's the finances or the workload or whatever challenges the care partner may be having. So, it's nice to be able to have that opportunity to just talk with other care partners, but then also to find out what are the solutions. So how did you get over this or what are the resources that you went to and locally what was available as well as on the national scale. So care partners are really an important part of the team.

Moretti: What variety of support groups does the IMF offer?

Tuohy: There are over 150 myeloma support groups out there across the country that we're supporting. And it really is thinking about what's available locally. So in the city, states, towns, what's available, because we don't want to be duplicative. If a patient is from a certain area, we will connect them to an already existing support group. If there is not a support group in that area we absolutely want to fill that unmet need. And our goal is to always help start and sustain a local beneficial support group. And we have lots of programs in place to talk one on one with a potential support group leader and we have programs and resources to help a patient or caregiver or a nurse or social worker, whoever that person is that wants to start a group, we're happy to listen to them to hear what their goals and their unique focus is on each specific group. And then we tailor the group to meet those goals educationally, supportively. And then sustaining that is what we strive for.

And then in addition to those local groups we've also started these virtual what we call special interest groups. So for example, we've got a group called Las Voces de Myeloma, and it's Spanish speaking only. They have a website that's all in Spanish, their group meetings are all in Spanish, and their speakers, everything about this group is tailored to help the Spanish speaking myeloma patients and care partners. And then we have a few others. We have patients and care partners with young families, which is so important, because I remember back to when Michael, my husband was only 36 years old, and we had a two-year-old and a seven-year-old. And our needs were very different. Our concerns and challenges were different than someone who was retired and talking about their grandchildren. We were raising a young family and how do we answer those questions and deal with a young family. And then even working as a young patient and trying to find those treatment options that fit our lifestyle. And then another group we have that we've recently started is Living Solo and Strong with Myeloma. So these are people that do not have a care partner or family nearby and how do they navigate dealing with their myeloma. We're continuing to think about the special interest groups while not taking away from the beneficial existing groups out there. So, we're always trying to amplify, enhance and never be duplicative or take away from any group out there because they're all so important and meet very unique needs.