Symptom Management

Clearing a Path to Better Understanding: Strategies for better communication

By Frederick W. Foley, Ph.D.

The ways in which the MS experience can affect the capacity to communicate with family, friends, coworkers, and others are numerous. People with MS sometimes feel that others do not understand what they are going through. Misunderstandings are common, and the person with MS may struggle to find a way to communicate clearly.

Understanding another person’s experience requires one to relate what they are saying to a reference point, a similar experience that one has had. In the case of an unpredictable, changing disease such as MS, this frequently stretches one’s capacity beyond what may be possible, at least in that particular moment. This is true at times even for those who are very involved with the person with MS on a daily basis.

Cognitive Challenges

Approximately half of persons with MS will experience some changes in cognitive abilities. Some of the more common changes are problems with how quickly one can think (processing speed), complex attention (paying attention when there are distractions present), learning new information and remembering it, multitasking (executive control), and verbal fluency. When present, cognitive changes may be subtle and neither the person with MS nor the person with whom he/she relates may be aware of them, yet they can have a profound effect on communication. There are several steps that can be taken to improve communication when cognitive challenges occur:

First, it is important to have neuro-psychological testing if cognitive changes are suspected, in order to characterize the nature (e.g., attention, memory) and severity of the changes. There is growing evidence that cognitive rehabilitation can help improve memory in MS, along with evidence that there are changes in the brain following “cog rehab” that can be characterized with functional MRI scans.

Second, it is important to change the way one communicates with others to facilitate better understanding and relatedness. Good listening skills set the stage for communication. In the presence of MS-related cognitive changes, it is important to practice good listening skills. 

Practicing Good Listening Skills

There are several things you can do: 

1. Do not multitask when listening to someone. Pay complete attention to the person you are communicating with;

2. Instruct the person to slow down or repeat themselves if you are having trouble understanding what they are saying; and,

3. Paraphrase back to the person what they are saying to you, especially if they are asking you a question or making a demand that has multiple components or parts to it. Paraphrasing helps clarify that you have heard the information correctly and provides rehearsal of the relevant information to help consolidate it in memory.  If you do not feel it is appropriate to paraphrase back to the person in a particular instance, mentally rehearse or go over the information before you attend to something else. Rehearsal helps compensate for changes in attention and memory.

Practice Empathizing with Others

A second cornerstone of good communication involves empathizing with others. Empathy is not sympathy. It means that you understand the perspective of another, and can communicate that to the person. For example, if you want to convey something to someone who is on the phone and you want to interrupt, it is less irritating to the person if you precede your request/demand with empathy (understanding of their situation/ perspective).  Example:  “I have to speak with you,” (no empathy) vs. “I know you are busy right now, but I need to tell you something” (request preceded by empathy).

The latter approach tends to encourage better listening in the person you are approaching.  So, when you are making a request or demand in which there is likely to be a negative response, it is important you precede your request with a statement that indicates you appreciate the perspective or situation of the other person. Another example might be a situation in which you want a family member to help you with a chore, when that person is sitting on the couch relaxing. Preceding the request with empathy, e.g. “I know that you are relaxing now….” indicates that you are paying attention to their situation/ needs as well as your own.  The following sentence stems can lead to empathic statements:

“I know you…”

“I can see that you…”

“I know you feel…”

Give Feedback about Someone’s Negative Behavior in a Positive Manner

At times it is important to give others feedback about behaviors they are engaging in that have negative consequences for you or others. When giving such feedback, always precede the feedback statement with empathy, indicating that you are aware of their situation. There are several important aspects to the feedback statement: 

First, it is important to describe the objectionable behavior in nonjudgmental or noncritical terms. For example, if you asked several times for a family member to help with a chore, and they haven’t done it as promised, and you want to give feedback, the following are some examples of noncritical (preferred) and critical (not preferred) feedback statements: 


“When you say you will help with (chore) several times and you don’t…”

“When you promise to help me and you don’t keep your promise….”

“When I have to ask several times for you to do (chore), and you say you will but you don’t…”


“When you act lazy…”

“When you lie to me all the time…”

“You don’t care about me…”

So, noncritical or nonjudgmental feedback statements are objective descriptions of the objectionable behavior, not your judgments about the persons character (lazy, liar) or feelings (not caring). If you give feedback in a critical way, it puts people on the defensive or offends them, making it much more difficult for you to get your point across. You can use the sentence stem “When you…” to begin an objective description of their behavior.

Second, it is important to let the person know what are the consequences or effect of their behavior. The consequences or effect can be things like a task that does not get accomplished (the chore in the example above), or it can be your emotional reaction to or thoughts about the objectionable behavior. To continue with the example above, the following might be consequences of the objectionable behavior:

“When you say you will help with (chore) several times and you don’t…the (chore) does not get done.”

“When you promise to help me several times and you don’t keep your promise… I feel like you don’t mean what you say and I feel hurt.” 

“When I have to ask several times for you to do (chore), and you say you will do it but you don’t… I feel angry and ignored.” 

Many times it is not so important to give feedback with an isolated or rare behavior that is objectionable, but it is more important to give feedback at repeated patterns of behavior that have negative consequences. For example, if someone did not keep a promise to pick up medicine for your MS-related spasticity at the pharmacy on the way home from work for a second or third time, you might proceed as follows:

(Remember, start with empathy.) “I know that you have a lot on your mind,” or “I know how tired you are after work.” Next, give the feedback statement, which might go something like: “When you forget to bring my spasticity medicine home [objectionable behavior], my spasms get worse and I am in more pain and upset.”  

Learn to Ask for Positive Behavioral Change

It is generally not appropriate to ask someone to change their feelings about something, since their feelings are their own. However, in communication it is frequently important to ask someone for positive and specific behavior changes. So far, we have discussed several key elements of good communication: listening, using empathy, and giving feedback. Following the giving of feedback, it is important to ask in a positive way for the person to change their behavior, and what the consequences will be for getting your request met. You can use the sentence stems, “If you [behavior change], then [consequences of behavior].

To continue with the example above regarding the family member forgetting to pick up the spasticity medicine, asking for positive change may go something like:

“If you pick up my medicine on time, I won’t run out and get painful spasms.” Or, “If you pick up my medicine when I need it, I would really appreciate it.”

So, putting the examples together:

“I know you have a lot on your mind, but when you forget to pick up my medicine, I get painful spasms and get upset. If you would pick up my medicine when I ask you to, I won’t get as many spasms and I would really appreciate it.” 

In summary, good communication is an active process. The MS situation frequently makes it difficult to understand the perspective of family, friends, and, of course, the person with MS. Clear communication that emphasizes the above skills can help clarify the many situations that are encountered by the person with MS and the people in his or her lives. 

Frederick Foley received his Ph.D. in Clinical Psychology from Fordham University, and is currently a Professor of Psychology at Yeshiva University in Bronx, NY.  Dr. Foley is the Director of Neuropsychology and Psychosocial Research at the MS Center at Holy Name Medical Center in Teaneck, NJ. He has dedicated his career to improving psychosocial measurement and rehabilitation in MS. He has authored over 80 publications on his work in MS.  He lectures internationally on psychosocial issues in MS, and has received awards from the Academy of Psychosomatic Medicine and the Consortium of MS Centers for his contributions to MS research. He has been on the Clinical Advisory Committee of the National MS Society and served in a variety of positions on the board of the CMSC, including President.

(Last reviewed 11/2012)