Steve

Hi, I’m Steve. I’m a Waldenström macroglobulinemia patient. I heard support groups can be great. What can support groups do for me and where can I join one?

Michelle Rajotte, LMSW

Thank you, Steve, for your question. Hi, my name is Michelle Rajotte, and I’m a social worker and the director of Blood Cancer United’s Information Research Center. I help lead a team of blood cancer Information Specialists, who are US based, highly trained and licensed oncology social workers and nurses.  They can help you or your loved one navigate a blood cancer diagnosis and connect you to financial and social support information.

There’s a lot of feelings that come along with having been diagnosed with a blood cancer. Every one of them is valid and there’s no one right way to learn how to cope with living with a blood cancer. The benefits of a group or peer support can be that there are people who will definitely get what you have been going through without having to explain very much. It helps you realize you’re not alone in what you’re feeling and there’s a comfort in that.

There’s usually people who are newly diagnosed and haven’t been in remission a while, and each can offer a unique perspective on what helped them. You get to look at things from a different perspective.  You may or may not agree, but it’s the opportunity to possibly reframe and experience. It also gives you a chance to give as well as get. The group gives you the chance to be there for others the way someone was there for you.

Another note is to encourage those who are supporting you to get support themselves and be through is a great way for them to do. At Blood Cancer United, there’s lots of opportunities for caregivers and loved ones to have support.

But there’s also lots of different forms of support. The great thing about having and considering different support options is you don’t have to go in person or be on camera for it to be supportive. There’s a wide range of support. Things like peer support, professional support, and personal support are all important to consider. Peer support includes things like groups, chats, discussion boards, and no one gets it like someone who’s been through it. Professional includes things like counselors, social workers, psychologists, and psychiatrists. That gives you a chance to unpack what you’re carrying and get some guidance without having to worry about taking care of them and how they feel. And that can be very different from what you’re sharing with your personal support or people like friends, family, or your faith or local community.

Each one of those is going to fit different needs for you depending on where you are in your survivorship. Someone who’s newly diagnosed may need different support than someone who has just finished up treatment or may need treatment again.

There’s also a common misconception that once you’re done with treatment, everything should be fine. And that’s not always the truth. There’s an adjustment period for you and those around you and getting support at this time is really important.

Blood Cancer United has many support resources to help anyone living with blood cancer. There’s a Patty Robinson Kaufman First Connection program, which is a way to talk with peer volunteers who have been through it over the phone to get that support.

There’s region support groups like local groups or either in person or in your community that can be found on Blood Cancer United’s website under local groups tab. There’s the Blood Cancer United community, which is like a discussion board where you can go on and talk with others any time of the day. There’s online chats, which are all virtual and literally just typing. So even if you happen to be hospitalized or somewhere where you can’t talk, you can still reach out and get the support.

And there’s also support from other organizations. At Blood Cancer United, we’re here to help you every step of the way and help you find that support that you need.