Knowing and growing
Today, having MS has opened up a door to more information than ever before. It is great to have all of this information available, but it can be difficult to tell when it’s reliable.
Somebody who sees this all too often is MS LifeLines Nurse Joanne S. She sat down with MS LifeLines to help us brush up on the MS basics, while explaining why educating yourself and others with the right information is key when it comes to all aspects of MS.
The initial diagnosis
MS LifeLines: Well, when people first hear “MS diagnosis,” what do you think they think that means?
Joanne: I think they believe every case of MS is drastic, and they think the worst. And there’s a lot of hype out there to let them think that. Yes, it can feel earth shattering to get that diagnosis. I would never minimize that. But it doesn’t always mean wheelchair or nursing home.
MS LifeLines: Just to piggyback off of that, some people may think that every case of MS is the same. But we’d like to think of MS as a thumbprint. What do you have to say about that?
Joanne: That’s a great comparison! Everybody’s thumbprint is going to be different. Everybody’s MS is different. Don’t go by other people. Your sister might have MS, your cousin might have MS, but it’s not going to be the same as yours. Yours is unique—as unique as you are.
MS LifeLines: So, with that said, what do you think everybody with MS should know?“Your sister might have MS, your cousin might have MS, but it’s not going to be the same as yours.”
MS LifeLines: What would you say to somebody who might be on therapy and all of their test results are stable, so they think, “Oh, I’m stable. I can stop treatment”?
Joanne: Two words: bad plan. The reason that your MS is under control may be because of the treatment that you’ve been taking. So, the goal is—and the idea is—not to stop the treatment that may be helping your immune system stop attacking itself. And if it’s gone, then the protection isn’t there.
On support and credibility
Joanne: As far as support goes, we try and remind people that anybody can put anything on the internet. So, we point people to the reputable sources. When people connect with the MS Association of America, the National MS Society, or us, they’re going to hear, and gradually understand, the options that are out there and how hopeful that is.
MS LifeLines: How about support on a smaller scale, like with friends, family, and care partners? Do you think that when they’re educated, it often leads to them taking more of an interest in helping?
Joanne: Absolutely. Put yourself in the role of educator. Leave printed materials around the house. People will pick them up. They will read them. And they will get it.
MS LifeLines: After friends and family members educate themselves, what are some of the small ways that they can help their loved one with MS?
Joanne: Identifying when somebody’s at their limit. What does that look like? Is that foot dragging a little bit? Are you just too tired to pick that thing up? Will it help if I fill the dishwasher? Will it help if I get takeout so that you don’t have to cook? And the other side to that same coin is helping people with MS understand that they’re not Superwoman or Superman. When somebody says they want to help you, let them.
MS LifeLines: I think that’s a great point, and I think that leads to this other idea that we talk a lot about: “finding a new normal.”
Joanne: That’s kind of the new buzz term is that “new normal.” But you know, you can kind of reframe that. Did you have a good day yesterday? Did you have a good day the other day? How’d you make that happen? How can you make that happen more? It’s really important to talk to people about what’s in their control, what they’ve already done, and what they can replicate. You know, “This is within my power. I have it within me to do this.”
MS LifeLines: That’s such a fantastic way to look at things!“If you don’t have a great relationship with your doctor, get a new doctor.”
MS LifeLines: I know that you’ve talked about a few different resources that people can turn to. But what are some first steps that people can take to start spreading the word about MS within their own community? Or even within their own family?
Joanne: Become the resident expert on MS. You know, understand what’s really going on. And the other thing is have a really great working relationship with your doctor. If you don’t have a great relationship with your doctor, get a new doctor. Because you’re going to have MS forever. And you really need and want a doctor that’s going to be in your court the entire time going forward, and that can help you educate your family. And then get some deputies who want to know about it. Find the people who are happy and willing to take you to doctors’ appointments. Find people that want to go to the MS LifeLines programs with you. Find some people who want to walk for MS. You know, be that agent of change.