Pat Elliott, who's had chronic myelogenous leukemia (CML) since 2009, knows more than a little about how to get the right support. Since her diagnosis, she built a worldwide network -- online and in person -- of people who are living with the disease.
"We share knowledge with each other and have a truly incredible level of virtual support that helps us stay on top of developments, find resources to help each other, and just get a better understanding of this condition," she says.
There are a lot of ways to get the help you need, from support groups to patient advocacy organizations. But often your first step is to reach out to those who know you best -- your circle of close friends and family. They can be a huge source of emotional backing when you first get your diagnosis.
"Those first few weeks are 'deer-in-the-headlights' time for most people," says Gail Sperling, MPH, a certified health education specialist at the Leukemia and Lymphoma Society.
There's a lot of info you need to take in about CML, which is also sometimes called chronic myeloid leukemia. Turn to your loved ones to help you process it all.
"Lean on your family to be your advocate, to go to appointments with you, write down questions, remind you to take your medication, be an ally, and to be a second set of ears who can communicate your needs and status to other family and friends when needed," Sperling says.
Your relatives can help you through treatment side effects if you have them.
"You need your family behind you," says Joannie Clements, founder of the CML Busters support group in Southern California. She's been living with the disease for more than 15 years. "If I hadn't had my husband as my advocate and my caregiver, I don't know whether I could have made it through the first 3 years. I had a rough time [with side effects]."
Ask your loved ones to pitch in with household chores on the days you don't feel up to par. "There's fatigue. Your energy levels just aren't what you're used to," Sperling says. "Rely on family to go to the market for you, help with the cooking, let you take a nap without feeling guilty."
Support From Those Who Know CML Best
Besides family and friends, you may want to connect with other people who have the condition. They'll understand just what you're going through and can share tips about things that help manage their health.
Elliott, who is now a patient advocate in Phoenix, didn't meet another person with CML until 8 months after she was diagnosed. She found someone through an online networking site, and she says it made all the difference.
"Meeting another human being with CML, being able to see her, touch her, see she was normal, just meant the world to me," Elliott says. "Meeting another person with CML is one of the strongest ways to help someone and give them hope."
Clements feels the same. She founded CML Busters with just one other person in 2003. Today the group has about 130 members.
"I don't know what we all would have done without each other," she says. "At a moment's notice, we can call anyone in the group and say, 'Hey, I'm having this or that. What's going on? How did you deal with it?'"
About 25 to 30 people attend the meetings on the second Monday of every month. She says when new members join, they sometimes look worried and scared at first. But by the time they leave, their spirits are raised. "Their head is held high. They have a smile on their face and a giggle in their heart. You can just see the hope," Clements says. "That's because they have talked with the people in that room that know and have the experience."
In support groups, members ask questions, share expertise, and socialize. Your doctor may be able to suggest places near you. You also can also learn how to connect with people who have CML and find other resources by checking these organizations:
National CML Society. It's an outfit that focuses only on CML and not other cancers. The group has info on the condition, specialists who treat it, and in-person support groups by location.
Leukemia & Lymphoma Society's First Connection Program. It links people who are newly diagnosed with CML with someone who faces similar issues. You can request, for example, a person who takes the same medication or who started treatment while raising small children. You can also find out about financial assistance for treatment-related costs.
CML Advocates Network. It connects you with support groups and patient advocacy groups worldwide.
Online Connections
If you can't find somebody with CML who lives in your area, online groups may offer an alternative. Facebook is home to many. Elliott follows about 20.
"I generally recommend that patients who are considering an online support group join several and get a feel for them, because they vary in quality," she says. She adds that while the groups can be a big help in giving you a community and moral support, they shouldn't be your only source of medical information.
Elliott says her network is "a global village of people that I call my blood buddies." Online relationships have led to in-person meetings with survivors from France, India, Scotland, Ireland, and Australia, among other places.
"It's been an extremely positive, uplifting experience to connect with people from all walks of life, from all over the world who also have CML, and not just to support each other with the CML but to get to know each other as people," Elliott said. "They really are friends."