How to build a support network as you navigate multiple myeloma

- Hi, I'm Kevin Brigle, nurse practitioner at the Massey Comprehensive Cancer Center at Virginia Commonwealth University, specializing in multiple myeloma. I'm a member of the International Myeloma Foundation Nurse Leadership Board, and today I'd like to talk to you and give you some ideas about how to build a support network as you navigate multiple myeloma.

First, what is the support network? It's simply a group of people that can assist during times of need. While some patients have an obvious care partner who handles most of their support needs, on occasion, every patient will likely need to rely on someone else or a team of helpers. A support network can provide meals, transportation, pet care, emotional support, or help with other activities of daily life. Research has shown that social support is quote protective, meaning that people with a robust social network tend to have better health than those who don't. Developing a support network lessens the burdens that come with being a patient. An often underappreciated aspect of the support network is the role of support team in improving patient adherence to the treatment plans. The support team, which can include family, friends, and healthcare professionals, plays a crucial role in ensuring that patients stay on track with their medications, appointments, and lifestyle changes. They can remind patients of medication schedules, accompany them to medical appointments, and provide encouragement and motivation.

So how do you build a support network? First, identify people in your social network. This could include family members, friends, neighbors, and even acquaintances. It could include people you know through shared interests, including work, worship, hobbying, volunteering, or support groups. Remember, even people who don't live close by can be part of your support team. For example, a team member who lives a long distance away can assist by being the coordinator of your support network. They can use technology tools like CaringBridge, Chemo Cars, or mealtrain.com to organize rides, meals, and daily support. You could find links to these websites on the IMF website.

Secondly, make a list of your specific needs and don't be afraid to share them. What kind of help do you need? A listening ear, a ride to medical appointments, or help with activities of daily living, like laundry, cooking, and yard work? Do you need extra help during more intense therapy, such as during a stem cell transplant, CAR-T, or bispecific antibody therapy? And be sure to remind family members to discuss family medical leave, better known as FMLA, with their employer, so that their employment is protected as they take the time to assist you.

Thirdly, consider professional or commercial services to fill in the gaps. Laundry, yard work, or grocery delivery services may be helpful. Speak with your insurance or Medicare Advantage plan to understand your coverage for professional services such as counseling, and also check with the pharmaceutical company that manufactures your therapy. Many offer patient assistance programs with a variety of benefits and services. Remember, myeloma is a marathon, not a sprint. You can continue to build your support network over time.

Reach out to the IMF about joining a support group. IMF sponsored support groups are available in most areas and their locations can be found on the IMF website. And for anyone who doesn't have a care partner, the IMF has a support group just for you called Solo and Strong that meets virtually on a monthly basis. As always, the IMF urges you to discuss all medical issues with your myeloma providers. Visit myeloma.org for more information or contact the team at the IMF Info line with your myeloma-related questions and concerns.