People in general cancer groups may not understand the specific challenges of living with metastatic bladder cancer, including urinary problems, persistent bladder infections, or the need to wear an ostomy bag, says Sivendran.
“If someone hasn’t experienced that themselves, it can be hard to fully understand,” she says. “Having someone with that same lived experience helps — not just to say, ‘I get it, this is tough,’ but also to share practical advice like how to manage your ostomy bag.”
Research also supports the idea that social connections can help bolster your mental health. One study found that people with bladder cancer who lacked social support were more likely to have clinical anxiety and depression than those with social support.
To find your community, Sivendran suggests building a “support portfolio,” which is similar to your friend groups in life. “I have my school mom friends, my medicine friends, my tennis friends,” she says. “It’s the same thing when you’re creating a peer support group.” Different groups help fulfill different needs.
Start by looking to national, specialized organizations for these varied, targeted connections:
- Bladder Cancer Advocacy Network (BCAN) With their Survivor 2 Survivor program, BCAN pairs you with a volunteer who has navigated similar cancer stages. They also provide virtual, in-person, and hybrid support groups to fit your energy level.
- American Cancer Society (ACS) Their app, ACS Cares, allows you to “digitally connect with a peer volunteer who has a shared lived experience,” such as by stage and type of cancer, veteran status, or whether you’re a parent, says Sivendran.
- Patient Connect Programs Many cancer centers recognized by the National Cancer Institute offer internal peer matching, where you’re partnered with a person who can offer practical advice on everything from starting a clinical trial to living with a urostomy.
- Telehealth Options Virtual support is ideal if you’re too tired to travel or don’t want to return to the clinic for a meeting. Organizations such as CancerCare offer free, moderated online support groups led by oncology social workers. Telehealth also allows you to regulate how much support you’re getting and at what time. “In a period of your life where you need [more] of it, you can increase the dose. And when you need quiet time, you can reduce the dose,” says Sivendran.
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