Talking about your MS with people who do not have MS

As anybody living with MS knows, it is a very difficult disease to explain. MS is experienced differently by each person, with the disease varying in severity, impact, and symptoms.

Communicating about your MS with people who do not have MS can be very difficult. The person without MS may not understand what you are experiencing, might compare your MS to the MS experienced by somebody else they know, or might make other assumptions about your life with MS.

When it comes to communicating about your MS, one size does not fit all. Each person living with MS has a different level of comfort with what they want to share. And, for many, how much they want to share may change based on who is listening. For example, a person living with MS may want to share a lot of detail with a spouse, close family member or best friend; they might want to share only a modest amount of information with a more distant relative or acquaintance; and they might want to share relatively little with somebody they barely know.

When talking about your MS with people who do not have MS, here are some points to consider

  1. Who is my audience? This seemingly minor point is really important when talking about your MS. Who you are talking to can make a big difference in terms of how you talk about your MS and what you are willing to share. It is important to consider the person’s role, relationship, knowledge, and what they might do with the information you share.

  2. How much do I want to tell them? Once you have identified your audience, then it is important to decide how much to share. It is important to realize that you do not have to share anything with anybody. In fact, in some scenarios, such as employment, it may be best to only share the information that relates to a specific need, such as accommodations. In other cases, however, it is important to share so that you get the support you deserve. In the end, deciding how much to tell another person may be best decided based on the next item.

  3. When this conversation is over, what do I want the other person to know? Often, we work forward in conversation, eventually arriving at the point we are trying to convey. We encourage people with MS to think about the end of the conversation first, spending some time thinking about what pieces of information they would like the listener to take away. For example, if you are having difficulty with pain, you might want different people to leave a conversation with different information. You might need your employer to know that you have a neurologic condition that causes pain, but can be managed with rest breaks every 2 hours. Or you might want your spouse to know that being in pain is really scary for you and that you would like their support in pushing on despite the pain. If you know what you want the listener to get from the conversation, then you can make your conversation be about those specific needs to make sure the listener gets the take-home point.

  4. When this conversation is over, what do I want the other person to do? Sometimes, even when we believe we are communicating our wishes clearly, we are not clear at all! Take this example:

    One night, Lisa’s pain and fatigue were especially high. She told her husband, “I’m not feeling well tonight.”

    Her husband responded by leaving her alone, so that she can rest.

    This causes Lisa to be upset because she felt her husband had abandoned her just when she is not feeling well.

    Lisa assumed that her husband would know what she needed without having to tell him. Next time, it might be more effective for Lisa to be specific about what she needs from her husband. In addition to telling her husband how she feels, she might also ask him to do something specific. For example, she might have said, “I’m not feeling well tonight. Can you just sit and read to me for a while?”

In your communications, it is often helpful to think about what you want to ask for and be sure to say your request clearly.

Asking for help

One of the most common concerns of people with MS is that people close to them without MS do not understand what they are going through. This can be terribly frustrating and can be a source of misunderstanding or conflict. The following is a common scenario:

A person living with MS wakes up one day and recognizes that their pain is worse than usual. They know they cannot do all that they usually do, so they say to their spouse, “I am having a bad MS day.” Their spouse, trying to be helpful, responds, “Why don’t you stay in bed for a bit and see if you feel better,” and leaves the room, to allow the person with MS to rest. The spouse’s response has come from a good place: they want the person with MS to feel better, so they have offered a solution and left the person with MS the space they perceive is needed to feel better.

The problem, however, is that the person with MS was hoping for a different response. When their pain is bad, they know they benefit from their spouse’s encouragement and partnership. They also know there are some specific tasks that need to be completed for their family and they are hoping their spouse will help get them done. The response from the spouse has accomplished none of this.

There is plenty of “blame” to go around in this scenario. The person with MS was not specific in their requests. Instead, they assumed their partner would know what they wanted and needed based on how they described their MS. The spouse, on the other hand, guessed – incorrectly! – what the person with MS wanted and offered a solution.

When communicating with a person who does not have MS, it can be helpful to consider the following recommendations:

  1. A person without MS may never fully understand what it is like to live with MS. This is not meant to be pessimistic. Rather, it reflects the reality that MS is a complex disease that is difficult to understand. Having this perspective also reminds the person living with MS that they cannot assume their partner is going to know what to do without some specific request. (This might also help you recognize that you might not know what it is like to be in their shoes either!)

  2. Be specific with your “ask.” In the situation above, the person with MS thought they were asking for help by describing how they were feeling. This approach, however, opened the door to a misunderstanding. Although many people find it uncomfortable to ask for help, we know that a well-stated request is always better than implying what is needed.

Navigating the carepartner relationship

Early in the disease, the partnership might mostly focus on providing emotional support to the person with MS as they adjust to living with the condition. As the disease progresses, there may begin to be a shift in roles, particularly if the person living with MS can no longer do tasks they did previously. Further disease progression may invite more challenges, such as by having the supporter take on a carepartner role. These changes can impact relationship dynamics, or the way in which two people in a relationship interact with each other. Recognizing that living with MS is truly a partnership, the National MS Society has put forward the term “carepartner” to describe this relationship.

For many, living with MS is a shared experience that involves their spouse, family, or friends.

Maintaining an effective partnership can be challenging. For spouse carepartnerships, it can be difficult to maintain the balance between the longstanding relationship and the MS-focused relationship. If caregiving needs increase, it can be easy for relationships to become particularly MS-focused, with the non-MS elements of the relationship drifting into the background. Here are suggestions that are useful in maintaining balance in the relationship:

  1. When possible, separate “caregiving” and “non-caregiving” time. One of the challenges of carepartnerships is the blending together of the MS-focused and non-MS-focused relationships. While we believe it is important to share the MS experience, it is also important to remember that the relationship was not built on MS. There are activities and experiences that brought you together; it is important to set aside time to continue with these shared interests.

  2. Redistribute roles. Living with MS requires adjustment – not just for the person living with MS, but for their family system. When a person living with MS cannot do a specific task done previously, their broader family system has to adjust to take on that task. While one option is to simply have somebody else take on the task, there is often the opportunity for a trade – perhaps the person living with MS can take on a task they did not previously do.

  3. Be creative. While MS can prevent a person from doing a task they previously did, it is more commonly the case that MS prevents the person from doing the task the way they used to do it. While subtle, this is a really important difference, because it may mean that the person can still do the task, just in a different way. Part of the partnership can include working together to find new or different ways to approach tasks that cannot be done as they were done before.

Finally, it is important to remember that part of the “shared experience” of the carepartnership includes discussing how it is going and how it could be made better. It is easy to fall into the trap of focusing only on the day-to-day needs, while the relationship itself drifts off course. Take time to check in on the relationship and discuss it with your carepartner.

Organizing your thoughts to communicate effectively

For some with MS, cognitive difficulties can further complicate communication in relationships. Cognitive changes occur in 40-70% of people living with MS and can impact areas that are important in conversation, such as your speed of thinking, ability to plan and organize, and ability to find the word you are looking for.

We routinely hear from people with MS that frustrating challenges in relationships can include keeping up in conversation (due to change in thinking speed), clearly conveying a thought or solution to a problem (due to difficulty with planning and organizing), or finding the words to describe a specific need (due to word-finding difficulty). It is very important for people living with MS to learn strategies to manage these difficulties.

Examples include:

  1. Ask for more time. Most people with MS feel that they can participate in conversation the way they would like as long as they have enough time. If the other person in the conversation does not need extra time, they may not recognize that they need to slow down. Therefore, it is important to ask for more time if you need it. This can include making a statement about needing more time (“It takes me a minute to think these things through”) or might require a more specific request (“I am not able to keep up, so just need a minute to get my thoughts together”)

  2. Use paper and pencil to organize your thoughts. If you are entering into an important conversation – about a challenge, or with a physician, or about your finances – consider writing down the key points ahead of time. This can help with organization and can give you a reference to make sure you have covered all of the points you would like to cover

Tips for carepartners

As detailed throughout this section, a carepartnership can be a complicated relationship. Just as we have suggested specific strategies to the person living with MS, we have a few to suggest for the carepartner as well:

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