Wednesday, August 28, 2013

People Don't Understand My MS Symptoms

 I want you to look around where ever you are. Look at all the colors that surround you. Now imagine this; What if those colors were relevant to the individual, meaning, what if what's blue to you is not the same blue that someone else may see. Maybe everyone's perception of a color is slightly different and that is why some people like the color green and some people like the color red? What ever color they see is a color the world gave a name to, "yellow" so that has always been "yellow" to them, that is what they understand.

All our senses have to be interpreted by our brains so is it that hard to believe that maybe all our brains interpret an electrical signal, known as one of the 5 senses, just a little differently? Could this contribute to why some people like the color blue more than green or the taste of cherries more than watermelon? The sound of a piano more than the sound of an electric guitar or the smell of rain more than the smell of desert plant life? What we see with our eyes as beautiful color, taste as delicious, hear as soothing, or smell as pleasant, might be just a little different than someone else's perception of those same things giving birth to a variety of preferences.

So why am I talking about this? Clearly I have too much time to think, right? Well, yes, probably, but there is a point to this. People typically accept what they see or feel as reality and to try to imagine that two people looking at the same blue sky might actually see two different things is just ridiculous but that is just how most people are. They have a hard time understanding the possibility of a different perception of reality because it is not what they have grown to understand and accept. We with Multiple Sclerosis would probably be just the same if we were never introduced to a different way of seeing the world.

Multiple Sclerosis effects the electrical signals in the central nervous system that make up our 5 senses. This causes us (those with MS) to experience weird symptoms. We take in the same signals from the world as everyone else but our "brains interpret them differently" or our brains never even get the chance to interpret them at all. Just like someone may not be able to imagine how his/her blue sky is green to me, he/she can not imagine how what is hot to the touch to him/her feels like nothing to me.

Now some people are much better at trying to put themselves in our shoes than others but everyone has their limits, everyone has something they may not be able to fully understand just like some people who are reading this just can not get a grasp on this concept of interpretation I am presenting and some people can. So to some degree, I can understand how the symptoms of MS might be hard for people to understand because they have never experienced them and only know what they have experienced themselves. The goal in getting people to understand what we go through is to help them understand what it is like to experience that different perception of reality, to put them in our shoes.

Based on that, I can say that people don't understand what we are going through for one of two reasons; 1, we didn't explain what we are feeling well enough or 2, they are not really trying to understand what we are telling them (this can even mean they simply are not listening to what we are trying to say, they do not want to cooperate). So all we can do ourselves is try to think of way to explain how we are feeling the best we can because there is not too much we can do it make someone try to understand or to make them want to cooperate and listen.

The other day I asked friends on Facebook what the number one symptom they have a hard time making people understand is and I was flooded with responses! The most common answers were fatigue, pain, and cognitive dysfunctions and I would have to agree! A lot of people look at us or treat us like we are just lazy when we deal with fatigue but I can say this; It's not even like we are just tired, it's so much more than that! I can be mentally wide awake but physically just dead... Or vice versa. People often compare your pain to what ever they have experienced. If you tell them you have a burning sensation they say "oh, yeah, just the other day I burned myself on the stove" like it is anything close to similar to what your experiencing. "Memory issues? Yeah I could not find my keys the other day, it happens to all of us". Thing is, it's not anywhere near the same, there is just no other words to use to explain what we go through so we use words that to some mean something simple that they themselves have often experienced. But it's not the same, we just don't all know how to word it any differently.

I often disregard it when most people don't "get it" because I have learned not to waste my energy on explaining things to people who really do not care. I am done getting frustrated over the fact that they just don't get it. The thing is, we all have people in our lives who need to understand, who should understand, who want to understand. Family, significant others, and close friends. This has long been an issue for me and lately I have been thinking I should do something to help people try to understand their loved ones with MS, especially after I saw just how many people are having issues with this. I know how it feels when people don't understand you,  the frustration of not being able to express what you are feeling, the frustration of not knowing of any existing words to describe how you feel. It's almost like a nightmare in which you are screaming for help but no sound comes out of your mouth, no one can hear you, your helpless. This is a horrible feeling, one that makes you feel hopeless and just want to sit in a corner and cry.

So I am going to try to really explain things like fatigue, cognitive issues, and pain in a way that people with MS can share these articles with loved ones to help them understand what they are going through with MS. I want to be very meticulous about these articles so people really understand what it may feel like to have these symptoms but until then my best advice for someone struggling to explain an MS symptom, is to step away from the conversation, sit down, and really try to write out how you feel. Write down some key points that describe what your feeling in a way that you think that person will understand and relate to. Then sit back down with that person and ask them to just let you talk without interruption so that you can read over everything you wrote and really try to translate your feelings into words.

13 comments:

  1. I understand completely! I work in a hospital OR and no else understands, or even wants to listen to how its different for me. You would think working in the medical profession people would be more empathetic, but its exactly the opposite.

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  2. Yeah from what I have seen as a PATIENT is people in the medical field are more NUMB to it unless they are in a position where it is their JOB to care!

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  3. Matt, you are such an amazing writer. I'm grateful you can put this all in to words because I sure can't! Thank you for your time and dedication in helping us FIGHT MS. Hope you are well and smiling friend :)

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  4. Thank you, it's too bad I never have the energy to carefully choose my words haha

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    1. You choose your words with perfection, Matt. I believe the way you write about the symptoms of MS is the most powerful tool you have. My family is making me see a cardiologist this Friday in Vegas but I already know it's MS since I've had an MRI of my brain 2.3 years ago and they found a lot of lesions. Now Im having the MS Hugs and my neurology appt is Oct 8th ... To do another MRI .. Thanks so much for sharing all your knowledge to all of us out here...

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    2. Thank you, hopefully that apoinyment brings an answer. What did they say the first time you had an MRI? I mean did they seriously just walk away from brain lesions? You SHOULD start a medication as soon as you can...

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  5. or you could play that wonderful Youtube vid (movie really) that girl did explaining what it's like having MS. her YT name escapes me, but I know you really liked it matt. my latest crazy symptoms include almost total numbness & tingling in left pinky finger only (been like that for weeks), also strange pain in right side of right ankle when I walk... peripheral nerve damage much?

    sleekcartim

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  6. I think your talking about Jessica Duley, I love that vid haha. I need to get my youtube up and going again, its been for ever! Sounds like it's time for steroids!

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    1. yes that's her. I just watched it again. yeah youtube allows us to actually see how your doing, so much is missed with just written word. cant believe how many ppl want me to do a my MS story part 2, since my vids are so terrible lol. My MS cog fog, word search BS, bad memory etc... has affected me more than I wanted to admit when I watch them. hopefully MS ppl can see that, cuz civilians wont. steroids HA... IDK bout that, but I do worry bout getting worse without some drug intervention, don't stress tim don't streeeeesss

      sleekcartim

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  7. Yeah they say like, 80% of communication, is through body language, so youtube is great for that. But yeah, drug intervention is sometimes needed, STRESS is ALWAYS something to avoid haha

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  8. I thought this post was going to be about optic neuritis because what I see out of each individual eye is completely different right now. My bad eye not only sees things with less clarity but also with less color. Everything is more gray.

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    1. Yes, color blindness is a common MS optic symptom :/

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