The Embarrassment Of Speech Problems with MS
Having lived with multiple sclerosis for a pretty decent amount of time at this point (I’ve now lived longer with it than without it), I can say that there are plenty of symptoms that have caused me some embarrassment over the years. The sudden falls at inopportune times, forgetting my PIN while trying to pay for something, and even being unaware that I’ve urinated myself in public (always with khaki pants on to easily display it).
While those aren’t pleasant, one of my more consistent sources of embarrassment is without a doubt the problems I have with my speech.
I have a number of MS problems that impact my speech. For one, I tend to get a bunch of numbness in my face, particularly on one side (while most wouldn’t notice, I can sometimes look in a mirror and actually see one side drooping down). This numbness covers part of my mouth region and makes me slur my words a lot.
I won’t even really know something will come out slurred until it comes out, so it can be hard to plan around (that’s one of multiple reasons why I try to avoid phone calls at all costs). The numbness issue is especially frustrating because I know what I am trying to say, it just doesn’t come out as I expect.
Another big issue I have comes to word finding. My cognitive issues from MS have caused me a lot of problems with my memory (whew, talk about forgetting what I was saying!) and my ability to find the right word. These things happen to most people, but they happen a tremendous amount to me. I often get lost during conversations and need to work extra hard to focus.
One of my most common issues is known as “scanning speech.” When this occurs, the basic rhythm of what I am saying is often broken up by long pauses. Basically, the flow of what I am trying to say gets interrupted. For example, I try to say something like, “the dog wants to go for a walk,” and instead of all of the words coming out right after the other, as they are separated by my pauses. So it would end up being like “The dog”...a pause…”wants”...an even longer pause…”to go for a walk.”
To hear it, it may sound like I am having word-finding issues, but that’s not the case. I know exactly what I’m trying to say, it’s just coming out all broken up. Sometimes the pauses are between words of a sentence, and sometimes they come mid-word.
Another embarrassing issue for me is volume control. I have a lot of moments where I can’t intentionally control my volume, so some words in a sentence are much louder than others. Like most of these issues, I rarely know when it’s going to happen, so it’s a surprise to me as well as everyone else when I suddenly say one word super loud while trying to whisper to someone in a quiet room.
As you can imagine, all of these issues are both an annoyance and a source of embarrassment to me. One of the big issues for me is that many people associate these types of speech problems with someone who is either drunk or not very bright. Even if they do understand it’s because of MS, it can be frustrating for people to have a conversation with me. I’ve done some speech therapy and that has been somewhat helpful, but all of that seems to go out the door if I'm tired, stressed, or a little too warm.
Sometimes I find that looking down and turning an ear to the person I am talking to helps (which inevitably looks like I am not paying attention or paying too much attention to something else, like my phone). Other times I have to stare at them and really focus on what they are saying (which can seem creepy). My close friends understand these behaviors, but it can make meeting new people difficult (you can just imagine the difficulties of dating with these issues).
A speech therapist may help
I do recommend seeing a speech therapist if you have issues like these. Even though I still suffer from them, having a better understanding of them has helped me deal with them and feel a little less embarrassed.
Thanks so much for reading and feel free to share! As always, I would love to hear about your experiences in the comments below!
Were you misdiagnosed with something else before receiving a MS diagnosis?