Mental Health and Multiple Myeloma

Managing Your Mental Health While Living With Myeloma

From the time of diagnosis through treatment and beyond, every stage of being a multiple myeloma patient comes with taxing emotions. A less-well-known diagnosis like myeloma can send patients into a research spiral that only sparks more fear. The stresses of everyday life can seem more intense, compounded by the unknown of the disease. And all of this is completely normal, according to Wendy Lichtenthal, PhD, a psychologist and psycho-oncology specialist at Memorial Sloan Kettering Cancer Center in New York City.

“The distress you’re feeling is what we would expect,” Dr. Lichtenthal told Patient Power. It’s part of the cancer experience and it's important that patients not feel bad about feeling bad, she said.

But just as every cancer journey is different, there are a variety of ways to manage your mental health over the course of your disease. One way to assess what you need is to take stock of how you’ve handled previous stressors, Dr. Lichtenthal said.

If “speaking to someone and having a private outlet for processing feelings was helpful [in the past],” then it might be a good idea to schedule time with a counselor or psychologist from the start of your cancer journey, she said. If you have a great support system but worry the details of your cancer journey might be difficult for your loved ones, seeing a professional might be a more comfortable alternative, Dr. Lichtenthal said.

Many cancer treatment providers have people on site to support you: psychologists, social workers, and chaplains. You can also ask your doctor to refer you to someone who specializes in psycho-oncology. Online communities like the International Myeloma Foundation, Multiple Myeloma Research Foundation, and Cancer Support Community can help you find a support group or mental health provider.

Maybe you’re someone who’s never considered seeing a counselor. That’s okay. But “if there ever is a time you should feel permission to get more support, this would be it,” Dr. Lichtenthal said. Pay attention to your thought patterns during and after treatment; they can be indicators that you need outside perspective, she added. For instance, if you’re feeling more self-critical, thinking to yourself that you should feel better or shouldn’t worry so much, it may be time to see “someone who can bring compassion and warmth [to the conversation].”

Another indicator that it's time to seek extra support from a group or counselor is increased anxiety about medical appointments. If you find you’re overwhelmed by or avoiding medical appointments, or maybe you're struggling to communicate well with your medical team, tell your doctor so you can work together to find a mental health specialist who can help. And if you have any feelings of hopelessness, like it's not worth continuing treatment or you don’t want to live anymore, you should speak to your provider right away.

Outside of counseling or therapy, there are other steps you can take to cope with the emotions you encounter during treatment. “Cancer involves a set of circumstances that feel outside of your control. Anything we can do where we have agency can help navigate those feelings,” Dr. Lichtenthal said.

There are so many domains of life to exercise agency. Maybe you make healthier lifestyle choices (more healthy eating, spending time outdoors, getting plenty of sleep, etc.), prioritize time with family or your community, or focus on more meaningful experiences, like traveling or spending time in nature. It’s about whatever matters most to you. But a word of caution: exerting agency is about what you want to do, not what you should do, or “shoulding yourself,” as Dr. Lichtenthal calls it. This exercise is not meant to never leave you feeling guilty because you missed your walk, ate something unhealthy, or had an argument with a friend.

Don’t be surprised if the waves of emotions come at unexpected times. Many patients don’t begin to process their emotions until the first round of treatment is over and they have time to “come up for air,” Dr. Lichtenthal said. Whenever the fear or sadness or anxiety hits, there are steps you can take on your own and with group and professional support to navigate the distress. Most importantly, give yourself permission to feel the range of emotions you experience, she said.