Multiple Sclerosis Journey: Sharing Experiences

EP: 1.Diagnosis and Management of Multiple Sclerosis Today

EP: 2.Treatment Adherence and Comprehensive Care in Multiple Sclerosis

EP: 3.Multiple Sclerosis Journey: Peer to Peer Support

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EP: 4.Multiple Sclerosis Journey: Sharing Experiences

EP: 5.Resources for People Living with Multiple Sclerosis

EP: 6.Resources for Patients with Multiple Sclerosis and Physicians in Post-COVID Era

EP: 7.Shared Decision-Making in Multiple Sclerosis

EP: 8.Access to Care for Patients with Multiple Sclerosis

EP: 9.Advice for People Living with Multiple Sclerosis

EP: 10.Advice for Physicians and the Multiple Sclerosis Community

June Halper, MSN, APN-C, MSCN, FAAN: Craig, you’ve talked earlier about meeting with other individuals and helping them adjust to having MS [multiple sclerosis]. Has that leaked to other illnesses? Have you found, in your community, that your experiences have benefited other individuals besides those with MS?

Craig Mainor: Yes. In fact, it’s almost reversed. Sometimes when I’m having this conversation about MS, individuals will share that they’re going through their own bout with another disease—diabetes, heart-related illnesses. We share notes and stories about our challenges in our journey, in finding the right medical team, in talking about it with our families. We often say, “I wish I had thought about this differently years before.” You can share and talk about different illnesses. Everyone has a challenge. There’s a term, preexisting condition. Everyone has something, and you can talk freely about it. This means there has been a shift in society. It’s not a scarlet letter if you have an illness. You know enough to share and talk about it and learn from others when they have those challenges. It’s a wonderful thing. We don’t do enough of it—the sharing—so I encourage individuals to talk.

Mary Ann Picone, MD: What Craig said is really important. Many patients, when they’re diagnosed with MS, tend to isolate themselves and feel that they’re alone in this. Being able to just to reach out to other individuals and know that they’re not alone is a big thing. Years ago, 1 of the actors on the show Laverne & Shirley was diagnosed with MS and didn’t tell anybody. He would say he had balance problems. He’d often say he was drunk rather than telling others he had MS because he was afraid he would lose his job and never find work in acting because of it. Many individuals still don’t disclose to their employers or to friends because they’re reluctant to share the diagnosis.

June Halper, MSN, APN-C, MSCN, FAAN: Stigma.

Mary Ann Picone, MD: But as Craig was saying, when you tell others, you open up a whole world in terms of help that you can get and making others feel more willing to share their stories.

Transcript edited for clarity