Talking About MS By Rachel, Wife, Mother, Domestic Engineer • September 28, 2018
Ah, talking about relapsing MS. If we don’t talk about MS it goes away, right? NOPE! Like it or not, once you or someone you care about gets diagnosed with MS, you’re going to be doing a lot of talking about it. Talking to your healthcare providers, talking to your friends and family, talking to others facing this disease. Maybe even talking to a therapist (I know that doing this has been helpful for me and my family). Every conversation serves a different purpose.
There’s no right or wrong answer when it comes to talking about relapsing MS. The who, when, and why depends on a lot of different variables, including your personal comfort level. Sharing something as personal as a medical problem can be a highly emotional undertaking. It’s scary not knowing how people are going to respond to you. Will they be supportive and positive? Should you tell everyone or just some of the people that you trust? Even now, thinking of all the possibilities gives me anxiety! It can be exhausting. MS is unpredictable and it’s hard to explain to others what to expect when you can’t even know for yourself. So where to begin?
Being Open with Your Healthcare Team
First of all, you should always keep lines of communication open with your team of healthcare providers. If you haven’t already, it’s important to find a physician with whom you can develop a good working relationship. Relapsing MS is a chronic condition that requires ongoing care, so it’s good to find someone who has experience in treating this disease. I find it helpful to keep track of my non-urgent questions by writing them down so that I don’t forget, then I’m prepared to get the most out of my appointment. It’s also helpful to bring someone along with you to your appointments. That person can act as an extra set of ears for you.
Sharing with Friends and Family
Another key group on your conversation to-do list is friends and family. I think this is a little more difficult to navigate because it can be so overwhelming to work through all of the emotions you’re feeling. MS shows up one day and becomes part of the family, so to speak. It’s like that relative who decides to move into your house one day and never leaves. Not only does this relative become a permanent resident of your household, but it’s not even a little bit considerate.
Something that I have found helpful when explaining relapsing MS to my friends and family is watching educational videos together or even attending learning events. Another great way to connect with others living with MS is by finding a local support group or even a support group that is online. You do not have to face this alone.
Answering Children Honestly
One of the top questions that comes up when I am sharing my journey at events—especially when my husband/care partner and I are sharing our story together—is how we handle talking about MS with our children. People ask how we handled it, what it’s been like, and how we have dealt with the emotions. One mom who was living with relapsing MS brought her young but grown daughter along to this particular educational event. They came up to us afterward and thanked us for sharing our story and being so relatable. Her daughter had asked us a bunch of questions about how we approached talking to our children, and the mother was nearly in tears because this was the first time her daughter had spoken up like that. Remember, MS is hard for everyone involved.
Now I bet you’re wondering how we have handled discussing MS with our children. We’ve found the best way is to answer questions to the best of our ability when they arise and be as truthful as possible. We don’t avoid any topics—even if they’re hard ones. Children, no matter what the age, can worry and feel anxious. My oldest daughter recently came to me and told me that she doesn’t worry about me as much. Having an open and ongoing conversation about MS as a family has helped us to be better communicators in general. That doesn’t mean that those conversations aren’t challenging, but they are worth having. It’s also taught all of us perseverance, how to work as a team, and to not give up! My children have learned to not judge others so quickly and to be compassionate. I’m so proud of them and their strong character. And we have all learned to appreciate the good in each day.
As you can see, the conversations differ depending on who you’re talking to and why. Everyone’s MS is different and everyone’s comfort level is going to be different—and that’s okay. How and when you choose to have these discussions is something that you’re allowed to be in control of. Please, please make sure you are working with a healthcare provider with whom you are able to remain in open conversation. That is one of the most, if not the most important, conversation to be having when it comes to talking MS. There are many resources out there to help get you started and help you along the way. You can even get in touch with one of the helpful Nurses from MS One to One® if you want to talk to someone on the phone right now.
Do you have any tips for talking about relapsing MS?
- LIVING WITH RELAPSING MS
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