Communicating Effectively with MS

By: Matt Cavallo

One barrier to accepting that you are now a person living with multiple sclerosis is communication. When I was diagnosed with multiple sclerosis, it seemed that every conversation I had ended up being about my MS. Whether it was family, friends or co-workers, inevitably during the conversation the person I was talking to would pause and ask, “So, how do you feel? You look great.”

While these conversations were well-intentioned, no one picked up on the fact that I didn’t want to talk about my disease. All I wanted was to do was have regular conversations about sports, work or the weather. The kind of conversations we would have before I was diagnosed. More and more I found myself avoiding conversations rather than reliving my diagnosis over and over again.

This was causing a tremendous amount of stress in my life and that stress was affecting all the relationships in my life. Whether it was at work, friends, family or my wife, all these relationships were suffering as a result of the breakdown in communication. I then realized that I wasn’t going to be able to control the way the people talked to me about my disease. If I wanted to end the stress of talking to people about MS, I was either going to have to cut everyone out of my life or change how I communicated my illness.

For me, change does not come easy. One of my 7 Steps to Living Well with a Chronic Illness, is Learning to Communicate Effectively. I believe that when you are diagnosed with a chronic illness, like MS, you go through five stages of grieving: denial, anger, fear, grief and finally, acceptance. Learning how to communicate effectively is what helped me go through these stages. Instead of losing relationships because of my MS I started to make changes that allowed me to accept my MS.

Excerpt from 7 Steps to Living Well with a Chronic Illness
Rediscovering My Purposematt blog

I remember sitting in my doctor’s office in the spring on 2007. I had previously shared with her a draft of my memoir, The Dog Story: A Journey into a New Life with Multiple Sclerosis. She loved the passion in which I describe my writing. She said that I had an articulate, succinct way of telling my patient experience story. She also said that there was an opportunity to share my story at an upcoming patient support group meeting. Without thinking about it, I agreed to speak at the meeting.

Then on my way home, a rush of anxiety and fear overwhelmed me. What had I agreed to? I had never given a speech. I didn’t know what to say or where to start. When I got home, I talked to Jocelyn about the upcoming speech. Given all that I had been through with my disease process, she thought that it would be good for me to attend the support group in general. She also thought that I would be good as a speaker. I was skeptical…

… I put on a blue blazer, a button down white shirt, a pair of jeans and some blue tennis shoes. My cousin came with me to film the event. As we drove, the butterflies started to mount in my stomach. I walked into the hotel lobby and followed the signs to the meeting room for the support group.

In an instant I had forgotten everything that I was going to say. I started sweating and paused for what seemed like an eternity. All eyes were on me and the projector beam was like a white hot piercing spotlight in an interrogation room. The doctor introduced me and I walked to the front of the room, raised my right hand and waved.

“Good afternoon everyone!”

I collected myself and began again. Eventually I started to feel my rhythm. The sweat was no longer pouring and I found my confidence and timing. The crowd even erupted with laughter when I interjected a joke. I was surprised. It was a subtle joke, but they got it. When that happened, the words started rolling off my tongue and I told my story better than I ever had rehearsed it. The audience loved it. Everyone came up to me afterwards and said how much my talk meant to them. I was touched.

Looking back, standing up in front of that crowd and sharing my story changed the way I felt about communicating my MS. Up until that point, I was not comfortable talking about MS at all. And it wasn’t because I was sharing my story in a front of a room full of people that caused the change in me. It was everyone in the audience who shared their story with me after the talk that helped me understand that I wasn’t alone. People shared similar experiences and how hard it was to talk about their illness. Since that day, I have made it my mission to spread the word about living with MS.

If you are going through difficulty with you MS or having a hard time accepting your diagnosis, it is OK. You are not alone. Learning to communicate your story of living with MS will help you in accepting your condition. Once you learn how to effectively communicate your story with MS you will find that you are not alone and that you really do look great!

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

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Getting Graphic When You Have Multiple Sclerosis

Young couple looking distressed or angry

Sometimes when you try to communicate with others, your point may be misconstrued, or something may be lost in translation, or you feel that no matter what you are saying the other person just doesn’t “get it.”

In my role here at MSAA, I have heard from many people who are frustrated or disappointed that someone close to them, be it a family member, a friend, or even a close co-worker (someone who they know cares about them), just doesn’t “get” MS. They may not understand the daily or even hourly ups and downs of MS, or the invisible or hidden symptoms you are trying your utmost to manage, or maybe it’s just an expectation that everything should be the same as before your diagnosis, when for you it feels like the whole world has shifted.

No one wants to feel that our friends, family, and supporters are clueless, unhelpful, or uncaring…after all you KNOW they care about you, and that’s why you include them and want them to be a part of your life, and that’s why it feels so wrong when you can’t express your needs or they don’t seem to “get” what it is you are dealing with, or struggling with, or needing.

When words aren’t enough, get graphic…and not in the style of an R-rated movie, but instead embracing that sometimes a photograph, picture, or artwork can help support what you are saying. Even a visualization can sometimes be helpful, for example, “Sarah, I know that you are trying to help, but when you say that it makes me feel like you’re asking me to put a bag with a smiley face on my head…can you picture that? ” If you picture it, a person with a smiley face bag is being asked to hide their true emotions, or even if they express those emotions they cannot be seen by others. Sarah may picture that bag the next time she wants you to turn your frown upside down and be more empathetic to your needs.

So, the next time you feel like words are just not enough: snap a photo of how you are feeling, draw a picture of your thoughts, or give a visual depiction of your concerns. You may find that a visual display is sometimes the bridge that is needed to help your support person really “get it.”

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You’re My Person…

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So in our day to day we sometimes overlook things that are important to us. It’s not done on purpose or due to an act of spite; it’s realistic that things get pushed to the side when we have so many other things going on. In a world such as ours with life going a mile a minute, how can things not go unnoticed? But when you do have time to talk, to listen, and be with someone else, who brings out the best of who you are? Who’s your person? Who is that being you turn to when you need someone to confide in? What is it about this person that makes you feel so comforted in communicating with them?

Every individual is different; thank goodness for that! It’s a person’s quirks, attributes, and strengths that attract us to them in the first place. We like when someone is different from us so they can offer new perspectives on things, but we also like when we share the same interests and personality traits that make the relationship flow so well. We tend to look for connections that will hopefully bring out the best in us – someone to complement our traits and allow the best part of us to shine through. We confide in others when we need to vent, discuss things out loud, and find validation for what we’re going through. It’s comforting to know that someone else is there when we need to reach out.

Your go-to person may be a family member, friend, significant other, or someone else – the relationship title doesn’t make a difference. It’s the communication and bond you share that matters. Family members may drive you crazy at times, but sometimes they’re the ones you’re closest to, without even realizing it. If you are still looking for your ‘person,’ that one who you can confide in and turn to in times of need, take another look; they may already be a part of your life…..

Who’s your person?

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Identifying Communication Barriers

Young couple in bed - distressed and sleeping

Throughout our lives we have all experienced a time or two where a complete lack of communication has occurred and something has gone wrong, whether someone didn’t get the toilet paper at the store, or someone forgot to pick the kids up at daycare. It’s often easy to say that there is a communication problem, but finding a solution or working towards improving communication is a whole other beast to try and tackle.

Identifying that there is a communication problem is the first step in correcting it. It may also be helpful to try and determine the type of communication problem you are having. When specifically talking about relationships and communication, the following are some of the more common communication problems that can be seen:

    • The “assumers”: those who think they know what the other person is saying or thinking, but don’t ask how they are feeling. Most commonly you will hear from these individuals something along the lines of, “Oh, I don’t have to ask him/her, I know what they will say.”
        • By making an assumption about what another person might say or feel, you are closing out the opportunity to have a conversation about a topic.
        • Start by using phrases such as, “Would you like to?” or, “What do you think about…?”
        • Avoid using phrases such as, “I know what you’ll say,” or “I probably already know the answer.”
    • Those that “read between the lines”: these individuals create false scenarios about every possible answer, thought, or feeling that could be occurring in the other individual. Most commonly, these are the “what if” individuals, who you will hear say things along the lines of “when he/she says ____, do you think they mean ___ what if they really think____?”.
        • By creating these scenarios, the individuals are removing themselves and distancing themselves more from the individual.
        • If you are unsure about a person’s response, use some clarifying statements to learn more about how they may really be feeling: “Can you tell me more about that?” or “Help me understand what you’re saying.”
        • Avoid using phrases such as, “I know what you’re really saying is ___.”; this type of statement pushes the other party further away and does not make them feel secure in their responses to you.
    • The “keep quiet and this will pass” type: for this type of individual, it is the complete lack of communication that leads to more issues in the relationship. These individuals choose not to pose questions or speak to their partners in hopes that things will get better on their own.
        • By choosing to not speak up about concerns that may be bothering you, you are sending a message that things are OK, and the things you were hoping would pass may not.
        • Open yourself up with some feeling statements like, “I feel like ___ when you say/do ___.” When focusing on yourself and your feelings, you give the other person the perspective of how they may be influencing you.
        • Avoid using phrases that may indicate blame such as, “You never ask me about my day.” Using these phrases may spark a defensive reaction from the other individual.

These are just a few examples of some of the communication challenges that individuals may face. It can be difficult to think of ourselves as doing something bad or wrong, or in any way hindering our relationships. But I encourage you to look at your current relationships and think about how your communication styles may be influencing the relationship. In what ways can you see yourself making changes? Have you found something that works for you and your partner?

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Wait a second, did you get that?

Closeup portrait of cute young business woman

Being able to effectively communicate with others is one of the most basic human needs and functions. Babies and young children cry or throw tantrums when they don’t get what they want or need because they haven’t discovered any better ways to express their concerns or desires. They need to be heard, but they can’t express their concerns directly so they resort to raw emotion and yelling to get their needs met.

As we grow older, we are taught that there is a time and place for everything and that generally when speaking in public (school, work, etc.), you need to do your best to control your emotions and try to calmly verbally address your needs or concerns. For example, in a business meeting while you might feel like rolling your eyes at an inane comment, or may even feel like yelling when your point hasn’t been heard or addressed after asking for the 100th time, responding in either of those ways in a work setting is likely to get you a reprimand at best and unlikely to get you what you really wanted (for example a shorter meeting with highlighted objectives, or a specific problem or concern to be addressed).

These communication issues don’t only happen in the workplace setting as you might have times where you feel like your doctor is just not hearing what you are saying or a relative is being insensitive or un-relatable. When you end up in these frustrating situations, you might have the impulse to cry or yell, and sometimes that might supersede your public decorum, but these also may be good times to evaluate your situation and how you could better try to communicate your need.

So how do you take a step back when you need to make sure something is heard?

You may need to take five minutes before speaking to give yourself time to process a more tactful response. You might pretend you are re-explaining the situation to a totally
Older male doctor with laptop talking to middle-age male patientdifferent person. You may also ask the other person to repeat back to you your concern in their own words, so you can make sure they “got it.”

Feeling misunderstood or like no one is listening can heighten your anxiety, stress, and frustration around a situation. Others can contribute to misunderstandings and miscommunications if they are not being active listeners and receptive participants in the conversation, but try to do your part. Try and emote effective communication. If the other party really is not listening, or you can’t overcome personal barriers, you can try to remediate the situation by going to others with your concerns (in the worst case scenario finding a new doctor or changing jobs…. although I’m told you can’t get a new family).

Can you share your tips for how to communicate better in difficult situations?

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