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Nurse Kim Asks...

Everyone feels differently about discussing relapsing multiple sclerosis (MS) with others. Some people like to be up front about it, but others may feel uncomfortable or fearful of being judged, so they keep it to themselves. How did you handle talking about your MS diagnosis and how do you approach talking about MS with others today?

Pam Answers...

Talking about relapsing MS with family and friends

September 10, 2018

In my case, the news about my relapsing MS diagnosis was practically relayed for me. I’m a member of a big, close family, so typically when something happens to one person it’s not long before the phone calls and visits follow—in other words, news travels, quickly.

One time when my big brother stopped by to check up on me, I immediately understood how worried he had become. His face was full of concern, and I could see that his eyes were swollen from tears. Seeing his pain and knowing how concerned he was for me was very difficult for me. I watched as his eyes scanned over the medical equipment that was delivered earlier. Then he asked the nurse a question that let me know just how scared he truly was.

With a quivering voice, he asked, “So, how long will it be before she will have to be in a wheelchair?” I was nearly anchored down with tubes, but I wanted to jump up and hug him and let him know that everything was going to be okay!

No matter how scared I felt, I always felt the urge to comfort my family and friends. It’s just the kind of person I am.

It wasn’t uncommon for friends and family to be emotional when they expressed their deepest concern for me. Oh, how I remember the look on Grandma’s face! But I’m a strong woman, and I have always done my best to make others feel comfortable, especially for my kids.

When it comes to talking to little children about MS, I realized how important it is to help them see the bright side in every situation. My kids were still young when I started to experience relapses, which at that time felt like more often than not. My husband and I never had that ‘discussion’ with them. In our house, it became normal to have a nurse come over—sometimes she would even leave toys behind for the kids. I remember a toy skateboard with a tall handlebar pole she left for them. My boys had a ball with that skateboard! They really didn’t think twice about my relapsing MS when they were young. It was normal to see Mommy take her medicine or declare ‘down days’ and sometimes change plans because of the heat or how buzzy her legs were. Even if they did grasp the truth behind what was going on, they looked forward to friends and family bringing us dinners and to overnight visits with Grandpa and Grandma or their cousins whenever I had appointments for ‘treatments for relapsing MS’ (whatever THAT meant). They grew up with flexibility and learned compassion.

Recently, I was discussing this with my youngest who’s now studying in a medical field. She told me she appreciates everything she learned as she grew up. I hope all of my children recognize that I took advantage of every moment when I was able, and I hope that they had a fun childhood.  

I used to be hesitant about how and when I would disclose my diagnosis to those outside my circle. I wondered if others would look at me and only see someone who is ill, or if I brought up my relapsing MS, would they think I was just seeking attention? Now, when I try to comfort others through their struggles, I tell them I have relapsing MS and that I can understand what it means to experience challenging and difficult times. Being able to share my diagnosis with others validates my empathy.

People forget that I still struggle, because most of my symptoms are invisible. MS is just a part of who I am, but it is not my identity. Lovingly, sometimes people forget that I even have MS. And lovingly, I just remind them.

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Connie Answers...

Talking about relapsing MS with family and friends

When I was first diagnosed with relapsing MS, my mother and sister were very involved, in my journey—and that helped me a lot. They attended all of my doctor appointments and we learned as much as we could about the condition, together.  

My immediate family shared the news about my diagnosis with my extended family, so I wasn’t the one who had to disclose my diagnosis initially, and that was fine with me at the time. Everyone in my family who heard the news was very supportive, and once the news made its way to my friends, they began reaching out and offering their support as well. They were just as uneducated about MS as I was, so they asked a lot of questions and we did as much research as we could to answer them.  

I made a few good friends by sharing my story and experience, and by helping others along their journeys.

Through the years, my relapsing MS hasn’t come up very often in conversations, and I don’t think it needs to. Today, it’s just one part of my life. The only time it really comes up is if a family member or friend meets someone who has been recently diagnosed with MS. With my permission, they give that person my contact information so that they can get in touch with me if they need support. That is when I don’t mind talking about MS, and in fact, I’ve made a few good friends by sharing my story and experience, and by helping others along their journeys.

When I found out I had relapsing MS, I told my coworkers and my employer, because it was relevant to my day-to-day work, and I felt it was my responsibility to let them know. But over time, lots of new people have come and gone, and I don’t feel the need to share my diagnosis with a new employee right away. I prefer that someone gets to know me for who I am and what I can accomplish before I talk to them about my relapsing MS. Most times I find that hearing about my condition makes other people uncomfortable, so I try to do my best to inform them about how relapsing MS affects me. Of course, I don’t tell them anything until I feel ready. Once I do, I just ask them not to treat me differently and to recognize my abilities, as well as my one disability.

I am proud to say that I don’t feel that my family, friends, or coworkers treat me differently because I’m living with relapsing multiple sclerosis. For me, it’s actually the perfect balance. Most days my relapsing MS doesn’t even come up in conversations, but on the occasions when I need support, people are always there to lend a hand, get me back on my feet, and help me forget about the little bump in the road.

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Nurse Kim Sums It Up

Talking about MS is different for everyone, but one thing is absolutely true—you should share your story only when you feel comfortable. There are no rules saying you have to tell everyone you know by a certain time, or even at all.

Some people have found that talking about their MS with others who can relate to them has provided a lot of extra support. They these events and appointments together, so they can gain knowledge and online events who share their personal experience with MS.

I suggest taking time to come to terms with your diagnosis first and then talking about it, if and when you’re ready. Do you have any tips for people who are finding it challenging to tell people they have MS? If so, I’m sure they’d love to hear it. Give your perspective in the comment section below.

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