Hear powerful stories from Tyler, Dawn, and Dr. Mitzi Williams as they share their MS experiences in the Black and African American communities, featured in a docuseries episode, supported in part by Biogen.
Hi, I’m Shari. I was diagnosed with relapsing-remitting multiple sclerosis in 2008. Although that was seven years ago or so, I do remember it like it was yesterday. I had a lot of emotions, a lot of questions, and a lot of feelings that I needed to process. It was an incredibly overwhelming time.
If you’ve been recently diagnosed, let’s just say we all understand. We’ve absolutely all been there. If you’re mad, if you’re confused, if you’re scared, if you’re angry, if you’re curious—it’s all normal. And just knowing that took me out of that constantly questioning place. It put me in more of a mind to do the research I needed to do, and to seek support where I needed to seek it. I really tried to find the best healthcare provider for me—and I did.
One thing that you’ll notice when you do start to reach out—and hopefully by looking at the videos on Above MS you’re starting to do that, which is great—is that not all of us experience MS the same way. In fact, it touches all of us really quite differently. I have certain mobility issues, so I have two leg braces and I walk with a cane, and I use other mobility aids as needed. And everybody’s experience is different. As I said, you’re going to find that there might be some people out there who have relapsing-remitting multiple sclerosis who are running marathons and working 80-hour work weeks. You’ll see. There’s a range. Not everything that’s happening to somebody else with this diagnosis is going to happen to you. And that’s really important to know, as well. It doesn’t mean you shouldn’t reach out and talk to whomever you want to talk to about that. It’s okay to talk to one another because no matter what the disease does to our bodies, we’ve all been there at that moment of hearing those words “you have MS.” We all have that in common, and we can all help each other get through that period of processing. So whereas we might not have the exact same types of relapses, symptoms, and issues in common, we’ve all shared in that moment. It’s important to remember that. There is a common language. There is a common bond, if you will.
What are some of the tools that you might want to use to make peace with that kind of feeling of anticipation, or when people ask you, “Well, you’re back in remission now. What’s next?” It’s going to be hard to answer those questions without your own sense of peace of mind. And I thought I’d just go through a couple tips to help you with that—little tools from my toolbox.
Find the right healthcare provider
One of them, definitely the top, is finding the right healthcare provider for you, that neurologist, like I said, who speaks your language or helps you understand things in a way that you can truly grab hold of what’s going on. Your healthcare provider is someone you’re not just going to turn to for questions, but you’re also going to trust. You’re going to trust their advice and be a partner alongside them in dealing and living with—and treating—your multiple sclerosis. So that is a major tool in your toolbox—finding the right healthcare provider for you.
Use your support system
Second is your support system. That’s key, right? Your support system could be your friends, it could be your family, and it could be people at work. It could be other people that you happen to meet because they also have multiple sclerosis. The people in your support system, no matter who they are, are there for you. The best thing you can do is reach out and tell them what you need. They’d do the same for you. They’re processing all of this news as well, don’t forget, so those people who love you very much, they’ll probably have some questions you can’t answer. They’ll probably have read things in an article they might want you to explain to them. Everything’s coming about with the best of intentions. Always remember that. You’ll probably feel that now more than ever around the time of your diagnosis because everybody is processing this news around you, and they love you and they want to help.
Find trusted sources
Go back to that trusted resource I mentioned. That trusted resource, your healthcare professional. See what websites they recommend. See what websites they trust and consider to be the online resources of choice. And stay with those trusted sources because then at least you know you can go back to your healthcare provider with questions about the things that you learn on those sources.
Get face-to-face support
You might find that you don’t want to search online for information or just read a book. You really might want physical support in person, face-to-face, and that’s wonderful too. And you can find resources for support groups, meet-and-greets with neurologists, and things like that right there online, like you are now. So don’t forget it can be a mix of both worlds to get the support that you need. It doesn’t have to be one or the other.
Lastly, I want to sum up for you what helped me truly get through my diagnosis: a positive attitude, a sense of humor, the support of my incredible family and friends, a very wonderful healthcare provider with whom I trust my life, and people around me who understand I’m going to have good days and I’m going to have bad days, and they’re with me either way.