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A man explaining something to two friends. They only see things in 3 colors while he sees 5.

Not Being Heard

I have been writing about my many experiences with multiple sclerosis (MS) for years, and one thing people have told me from time to time is, “This is exactly how I feel! I’m sharing this with my family! You’ve put what I’m experiencing into words!” Many people with MS have a hard time describing what they’re experiencing to loved ones which is totally understandable because it’s definitely not easy to translate the chaos MS can cause into words that people can easily understand. In fact, many times, I struggle to put what I’m experiencing into words that make sense even to me, and I’m the one actually feeling what I feel! So how could I expect someone else to get it? It’s incredibly frustrating to not be able to explain to someone how MS is affecting you and even worse is when you start to feel like people just think you’re making stuff up, you’re crazy, or you’re just overexaggerating things that everyone deals with.

Trying to explain MS symptoms

When I was little, I used to have this nightmare about, let’s call it a monster, that was trying to get me. I would be in a room alone with it, and the door would be open, allowing me to hear everyone talking in the next room down the hall. I would yell and cry for help because the monster was right there creeping closer and closer towards me. The thing was, despite me shouting at the top of my lungs, no sound would come out. No one could hear my cries for help. No one could hear me. The feeling of helplessness and of no one being able to hear me that consumed me during this dream? That’s the feeling I get when I’m trying to explain an MS symptom to someone, but I just can’t seem to make them understand what I’m dealing with. From my perspective, what I’m experiencing seems super obvious, but no matter how I try to describe it, I don’t feel heard. They don’t get it. They don’t hear me.

Invisible symptoms are the hardest

While some symptoms of MS can be relatively easy to describe because they can be seen (like tremors or difficulty walking), many symptoms are invisible and can’t easily be measured. These symptoms can often be the worst, yet sometimes when you try to tell people about them, it feels like they are listening to you talk about an imaginary friend you have. “Oh, his name is Ralphie, huh? Ralphie sounds pretty mean! Maybe if you just take a little nap, Ralphie will go away? Did you try that?” OK, I’m sure most people don’t come off that condescending, but I’ve heard many stories. Anyway, it’s maddening! “My symptoms aren’t imaginary just because you can’t see them or understand what I’m telling you! They’re real!”

Describing an MS symptom feels like…

I like to think of it like this; every color that we can physically see with our eyes is made up of some combination of red, blue, and yellow, right? Red and blue makes purple, red and yellow make orange, blue and yellow make green, and so on. But what if one day, something happened, like, you were struck by lightning and then all of a sudden, for some crazy reason, you could now see a color that was not made of red, blue, and yellow. No one else could see this color, only you. How would you describe it? How could you describe a color to someone that is literally incapable of seeing it? Sometimes, that’s how trying to describe an MS symptom feels… I’ll just have no clue where to even start because no one can “see the colors that I can”!

It’s nice to finally feel heard

Unfortunately, I think a lot of people hear you try to explain a weird MS symptom to them and subconsciously, rather than simply admitting that they can’t understand what you’re telling them, they decide that it’s easier to just assume that it’s all in your head. I’m not really blaming anyone here because that’s what all our brains try to do; the brain tends to freak out when it can’t explain something. This is why, in my opinion, it’s so important for people with MS to have friends who also have MS because chances are, they have experienced what you’re going through as well, so they’ll probably understand what you’re saying. They too can “see the strange new colors that you can see that no one else can.” Finally being around someone who gets it is so relieving, even therapeutic. It’s nice to finally be heard. I wish I knew how to make the people around me who don’t have MS fully understand what I deal with on a day to day basis, but I’m still not one-hundred percent sure how to do that.

How do you deal with the difficulty of trying to explain to people who don’t have MS what different symptoms are like? Share below!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • hobobag
    2 weeks ago

    This conversation about how to describe to others what you are feeling at any one time with MS is so good. I have had “MS” for 38 years, which was initially RRMS for probably the first 25 then moved to SPMS probably 13 years ago. I struggle with fatigue and mobility and other lovely symptoms which I will spare you.
    The image of seeing a different color that you have to describe to others is a wonderful analogy, and one I will start using now.
    My analogy has always been MS is like having one of those “Hobo” handbags that were popular in the 60’s. (Now this analogy may be somewhat difficult on my men MS friends, but just change the image to a backpack with a small opening at the top).
    For me having MS (with some numbness and lack of sensation in my hands), is like having to reach into this large bag for your wallet with some fear and trepidation. You never know what your hand will encounter while you are searching around for the money. The tube of lipstick that has invariably separated from the top-covering your fingers with bright red gloss, or fruit like a baggie of grapes or a banana (which may be a few days old by now) for the kids I was shepherding around. And of course the perennial half eaten chocolate bar hurriedly re-wrapped. This one I cannot blame on the kids… Rather than finding your nice firm wallet, you never know if you are going to be surprised by some gooey thing!
    MS is like that for me. I never really know how I am going to feel or what I am going to have to deal with from one day, hour, moment, to another. I finally began to chuckle at the concept. The unexpected variability of symptoms is overwhelmingly frustrating, but what can I do but adapt? (e.g. wipe off my hands from the lipstick, melted chocolate, slimy banana or whatever I happened to encounter that moment). It is what I have to deal with because of that crazy MS hobo bag!
    For me it is one day, one change or challenge at a time. I have tried to lean on a good dose of humor to ease my days. and my other mantra is always- “Keeping my ME in the midst of MS”!

  • Matt Allen G author
    1 week ago

    I think this is my favorite comment ever lol, the bag analogy is great. I totally relate to it!

  • hobobag
    3 days ago

    Glad it made you laugh!

  • chriscoxrox
    2 weeks ago

    Well said

  • Richard
    2 weeks ago

    Great analogy! I plan on stealing and using it on my friends. Reading your blog helps me because you do get it. Thanks

  • Matt Allen G author
    1 week ago

    One of my main goals is to put things into word so that people who might be having trouble doing so when talking to friend/family will be able to explain what they are feeling/thinking

  • Shelby Comito moderator
    2 weeks ago

    I’m so glad Matt’s articles and this analogy help you find the right words to help explain what you’re going through with others. Thanks so much for taking the time to comment!
    – Shelby, MultipleSclerosis.net Team Member

  • pmdpeace
    2 weeks ago

    I limit the number of people that I communicate with about MS. Your comment “In fact, many times, I struggle to put what I’m experiencing into words that make sense even to me, and I’m the one actually feeling what I feel!” rings so true for me. That has become an increasingly difficult challenge. I’ve reached a point where I share most of my thoughts about MS with those in this community and one other website. I do share some thoughts with my siblings and one friend. When I can come up with the words ! Thank you for being such a great writer and such an inspiration.

  • Matt Allen G author
    1 week ago

    I share just about everything with anyone who asks but I definitely don’t go out of my way to share certain things. If it’s someone who I actually see often? I usually try to explain better than I do when talking to people online because online? You can’t really see or hear my troubles, like me having a hard time finding words when I’m speaking.

  • Bkboo
    2 weeks ago

    I am still trying to figure this out! I constantly feel no one is listening to me. For example, I will be outside with a boyfriend mowing and all the sudden my ears ring and feel that I have been in an airplane! its awful or I will be in high gear and suddenly I switch into low gear and walk funny. But, I will keep going to finish the job at hand. I tell me boyfriend and he just looks at me, says sorry and gets back to work…never feel truly heard.

  • Matt Allen G author
    1 week ago

    I think the problem is (for many people with MS) that people have a hard time understanding what you’re experiencing and why, especially because “you look fine”. You try to explain it to them but they just can’t get past the fact that what you’re saying doesn’t match what they are seeing so after a while, everything you have to say about your MS, starts to lose weight.

  • potter
    2 weeks ago

    I usually just tell people that it is damage inside of my brain that is causing problems with the inside of my body. They usually say Oh! I thought your color comparison was great. I am a artist and was a decorator for 20 years. People would show me paint and fabrics that didn’t work together. The primary color that was wrong would scream at me. I would tell them that there was to much red in the paint. They would look at me like I was nuts and say that paint isn’t red. I would get a paint sample that was similar but not as red. Most people could see the red after that some couldn’t. Maybe we should carry around a copy of our MRI and a copy of a normal brain. Potter

  • Matt Allen G author
    1 week ago

    That’s a good example of how some people (a lot of artists) can literally see a sharper array of colors than others, kind of like when you see those test cards to check if you’re color blind. Obviously, the pattern of colors in the middle is a different color but people who are color blind can’t see it. So take that up to another level and we have MS. A color that can’t be seen by not only people who are colorblind but people who aren’t, people who have an artist’s eye and can normally see very subtle differences that other’s can’t.

  • corgi9
    3 weeks ago

    Matt
    Someone on this site, and I cannot remember who, so accurately explained MS as follows (and which has now become my mantra):

    MS is like an ICEBURG. What you see ABOVE the surface IS NOT what is BELOW.

  • Matt Allen G author
    1 week ago

    That is a classic MS explanation, if you haven’t already, do an image search for “multiple sclerosis iceberg”, I’m sure you’ll be happy with the results.

  • CarolJoy
    3 weeks ago

    We keep forgetting “There are 4 types of MS”
    •Relapsing-Remitting (RRMS)
    •Secondary-Progressive (SPMS)
    •Primary-Progressive (PPMS)
    •Progressive -Relapsing (PRMS)
    These should all be described in helping people understand symptoms.

    After having a drop foot drag issue for 6 months I went to a 24/7 powerchair no longer able to walk, drive and having home care assistance. It was quick, was diagnosed with PPMS, very progressive. Medication won’t help me at this time, too progressive. I have changed my home into a smart home, mobility van that family and friends drive me, 24/7 powerchair. I need help bathing, bidet toilet to help with bowel & bladder hygiene. Very costly !!!

    Please make the 4 types of MS better known with describe symptoms, medication and how to prepare yourself with money, home accessories, technology, family planning, and communicating with doctor

  • Matt Allen G author
    1 week ago

    It’s very difficult to explain to people the different types of MS because trying to get them to understand MY MS (RRMS) is difficult enough, BUT, you’re right, there isn’t enough awareness. So, I think I know what my next post will be about. Explaining what the different types of MS are, how they affect people differently, how they can or can’t be treated, etc. Thank you for this great suggestion, I’ll be sure to credit you in this post!

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