Although many people think of multiple sclerosis as primarily a diagnosis with physical symptoms, its reach is far more extensive. Since MS begins in the brain, it can impact one’s ability to communicate – namely, it often impairs memory and speech.

To find out more about the speech and memory challenges community members deal with, we reached out to members of our Facebook community and asked “Do you ever suffer from communication issues and expressing yourself with MS?”

More than 550 community members shared. Here is what was said.

Losing a train of thought mid-sentence

Struggling to hold onto a train of thought is a common part of MS. Many people living with MS experience trouble with memory, and, unfortunately, this side of the disease is also often progressive. Many community members shared that forgetting what they were saying was one of the earliest signs of worsening memory loss.

“Yes! I always forget what I am saying mid-sentence.”

“I started with losing my ability to recall words mid-sentence back when I was in my 30s.”

“I forget what I wanted to say, what I said, and what someone else has told me.”

Struggling to find words

Struggling to find words is another common symptom of MS. Many in the community shared that they struggle to remember the words they want to use. Several described it as feeling like their vocabulary has been erased, which can be very frustrating. It is especially troubling when in important meetings, such as with a doctor or when presenting for work.

“Yes, I lose my words at times. I also feel I cannot convey very well to my doctor the issues I am dealing with.”

“Sometimes I feel like my vocabulary is gone.”

“I feel sometimes that my vocabulary has been erased from my brain. Even simple words are gone. It is quite frustrating! I am considering taking a brain supplement.”

Problems with stuttering

MS lesions in different parts of the brain can lead to speech issues, such as stuttering and slurring. These issues can range from mild problems to severe difficulties with communicating. For many, these communication issues can be frustrating and even embarrassing.

“I have occasional bouts of scanning speech where I stutter so badly it sounds like I am having a stroke!”

“I either stutter (never did before) or my mouth works poorly and I speak ‘funny.’ It is very aggravating. As an intelligent, well-educated woman, I find it embarrassing.”

Social anxiety as a result of communication issues

Many community members shared that having so much trouble with their memory and speaking has led to them avoiding social situations. They feel anxiety around new people, which makes sense. However, avoiding social situations or isolating can lead to sadness and depression. Some people with MS find a way to tell new people that they have trouble speaking and with their memory because of their diagnosis, and most people do respond with understanding and kindness.

“I have social anxiety when it comes to meeting new people.”

“I often hate talking to/meeting new people. I have social anxiety because of this.”

“Communication is the worst thing for me. Maybe it is the reason why I like to be alone.”

“I have found I have quit talking because it is so hard to hold an intelligent conversation anymore.”

We want to say thank you to everyone who shared. This can be a difficult topic to discuss, and we appreciate vulnerabilities expressed.