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The MS Persona

The MS Persona

I am not sure how many of us do this but I know a lot of us do, I mean, I know I do. You wake up and you just know it’s going to be a horrible day; you are dizzy, exhausted and in a lot of pain. Then, as the day goes on, someone asks you, “Hey, how are you doing?” but rather than telling the truth you put a smile on and say, “I am ok, what about you?”

Sound about right? Well, why do we do this? Why not just be honest? Well at least for me I think if I was totally honest every single time somebody asked me how I am doing then people may stop wanting to be around me because, “Matt is just too negative.” So I often just say I am fine while hiding behind a smile. A fake face, a mask, a persona. I am the super happy and positive guy! Right? Well, sometimes? I am actually in horrible pain, I am exhausted and I feel hopeless. Who wants to be around that? And who wants to be volunteered as a therapist? They just asked how I was doing…

Another reason I would rather do this is because it is just easier on me. I don’t always have enough energy to try to explain something to someone that I just tried explaining to someone else. “What is spasticity?” It’s not always as simple as, “I am good” or “I am not so great.” I am pretty sure when someone asks me how I am they are not expecting some long lecture on neurology and how my disease is making me feel today. A lot of this stuff is not even relatable to the average individual so then it becomes a game of trying to find the right analogy to make someone understand that “it’s not the same as when you lost your keys…” It’s frustrating which is tiring…

What really has had me thinking for a while is when I thought, “who am I?” I realized that I don’t entirely know where “the real me” ends and the “persona of me” begins because 90 percent of my life feels like I am just hiding how I really feel to spare the people around me. Not just how I feel physically though, maybe I hear someone say something and before I say the first thing that comes to mind I have to stop and think, “Wait, I can’t be all bitter because of my life situation, people don’t want to hear that, be positive” and maybe that’s healthy but all those negative emotions build up. It stays with you and then when you actually find someone who really does want to understand how you actually feel you unload on them, you just need to vent, you overwhelm them and possibly push them away because they realize, “Wow, that was a mistake.”.

This is why I am sure I need a therapist. I am sure most of us are just trying to survive but more than likely the way we are “getting through the day” is not healthy. A therapist might have a much better solution than hiding behind a mask. It’s like when you go to physical therapy and they tell you that because of your spasticity you are walking “like this”; the human body always tries to adapt to change by doing the easiest thing possible to achieve whatever you are trying to achieve. The easiest way is usually bad for your body and will do more harm than good in the long run. So you have to do what’s hard and try to learn how to function properly again. I imagine the mind is the same way and hiding behind a persona is easy but probably not good for you.

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Comments

  • tfs
    3 years ago

    I was diagnosed on May 2014 and was fortunate to be referred early in the game to a neuropsychiatrist with a specialty in MS. I am pretty assertive advocating for myself and trying to deal with depression. I use every tool at my disposal: group therapy, individual therapy (weekly) through employee programs, church….. some friends get it. some friends are more acquaintances, but they provide a flavor to life also. It is an important component, and one I find the MS Support group does NOT address. I look “okay” so that gives some people the right to “cling” and not pay attention to my “No. I’m sorry. I cannot do that for you.” If people had any idea how much I am struggling with, they might stop asserting that I don’t do enough for them. Perhaps MS will be the greatest gift I am given. Learning more about ME as my body fails.

  • Matt Allen G author
    3 years ago

    yeah, it’s one of my default responses” Yeah, if only I FELT as good as I LOOK” because people always tell me how good I look but… yeah… I know they just don’t know what else to say but it still bugs me…

  • TracyBelleLee
    3 years ago

    I long for the days when I had someone to ask me that. My husband and father don’t EVER ask because they really DON’T want to know. This allows them to be free of the pain they experience due to my suffering. If they don’t know then they are much better. My mom had a stroke 12/3/2014 and she was the only one who REALLY DID want to know how I really was. My husband will argue with me that I seemed fine on the phone earlier when I called the insurance company. Like he knows more about how I’m feeling than I do.

  • Lefty Lib
    3 years ago

    Oh, and I hate to catch myself using the wrong spelling! “They’re”…. “They know they’re likely to get an earful and just avoid talking or keeping in touch.”

  • Matt Allen G author
    3 years ago

    lol I was always a correct spelling and grammar person so now I annoy myself ALL THE TIME

  • Lefty Lib
    3 years ago

    Thank you, Matt for expressing what so many of us feel. I’m 26 years into this dis-ease and have found therapy to be very helpful, but expensive. If you can manage it, then do it… or perhaps there is an organization locally that can provide one for you.

    I mentioned to someone else, in San Diego, CA I spoke to my local National MS Society Chapter and they set me up for free counseling at a provider here in town, Jewish Family Services. If you are near a chapter or one in your region, they can probably refer you to something. They do more than people realize, just ask.

    Plus your city/county may have services you can access for free as well.

    It’s not always as easy to talk to a therapist who doesn’t quite get MS, but it is better than not talking at all and can still be quite helpful.

    Best to you, Matt.

  • Matt Allen G author
    3 years ago

    Yes, I am going to be looking for JUST the right person, I have more non-MS issues than MS issues so I need the best of both worlds haha

  • mud909
    3 years ago

    I am aware that when someone casually asks “How’s it going?” does not necessarily mean they really want to know. Social norms of greeting may not mean they want us to share our struggles. The person asking may be having a really tough time themselves and are just trying to get by. I have a therapist and a few people to talk to about my struggles. I need those people. The worst part of telling acquaintances about my problems is the offering of advice on my condition. I don’t want to tell them that a hardcore cardio workout would be helpful. I would just get irritated and they would think I am ungrateful. Sometimes I can’t hide how bad things are, so I am honest and throw in a witty quip. It sends the message that “Yeah I’m pretty screwed today, but I am not going to try to dump it off on you.” People respond well to that sort of thing in my experience. 2 days til therapy day. Believe me, she earns every dollar she makes from my sessions.

  • Matt Allen G author
    3 years ago

    Maybe I should have been more detailed, some people say “how’s it going” and I know what that mean but some people literally are asking how my MS is “hey, how are you feeling?”

  • Azjackie
    3 years ago

    Wow! Each post is reading my mind. Thank you all for sharing what I hide most of the time.
    I am not honest with family or friends how I am feeling because I don’t want their look of pity and I simply do not think they would understand. I know they love me but they simply can not comprehend my struggle. Just as I can not understand theirs.
    I can not even think for a moment my Mother’s (Bionic Women) two artificial knees and pace maker or friends’ childbirth.
    I just let it go with “I’m o.k.”

  • Cathy
    3 years ago

    I do the same thing. I do not like the look of pity, especially from my mom. If I tell her truthfully how I feel, she gets upset, which gets me upset.

  • Matt Allen G author
    3 years ago

    If I have kids one day, I will know what it’s like to love them as a father but never will I know how it feels to love them as a mother. We are all different and though we can try to IMAGINE what it is like to be in someone else’s shoes, sometimes it is just impossible to know exactly how it feels.

  • Sherlynn
    3 years ago

    I often forward your articles to my husband because you are able to put into words exactly how I feel. I have a difficult time expressing my feelings. I always put on the happy face even though I feel so sick I can barely keep it together. It is utterly exhausting and isolating. It’s so much easier just to be alone the majority of the time. Friendships are so hard for me to maintain because my friends are living normal, busy lives and cannot possibly relate to feeling so ill on a daily basis that showering is like running a marathon. Thank you for being brave enough to share your feelings. It helps me so much to know that I’m not alone in this struggle.

  • Matt Allen G author
    3 years ago

    Oh don’t even get me started on the envy and jealousy I feel towards friends haha. But yes, I have always enjoyed some degree of solitude but now I enjoy it so much more…

  • Benb
    3 years ago

    Hi there.

    I’ve had MS for about three decades [I’m 37 years old], but was diagnosed only 14 years ago (after humiliating repeated rebuffing toward my symptoms at the hands of Hippocratic Oafs; they “didn’t have” Pediatric MS at that time [but that wasn’t necessary, because I did!]).

    Anyway, My therapist and I have been working with each other and EMDR therapy for 5 years now. I can’t say enough about how it’s changed my life. I would suggest that it’s essential for anyone with an Auto-Immune disease–when the thing that is designed to protect you (i.e., the immune system), does its job by destroying you (i.e., erosion of myelin and axons and whatnot), there is a mammoth job of processing (trauma, in any of its forms, typically) and re-mapping (creating alternate pathways for emotional, physical, and temporal experience) that is required.

    One thing that I have learned (or, rather, AM learning) is that what matters most is not how others see you, but how you relate to yourself. I see all over written accounts the inordinate self-judgment experienced by people living with Multiple Sclerosis. I would argue that the very same self-estrangement is what is at the crux of the disease’s progress. Self-estrangement is a minefield in which there is no actual safe terrain–only the illusion thereof. And what results–doubt in one’s own perceptions–is a toxic whirlpool.

    Before my diagnosis–as a child with “a great deal of promise”–I had no place to put the dissonance and static borne of my unexplained symptoms. To assert some control over this loss of control, I did what I thought was clever–I smelted it into a persona. And it worked! I was a lovable buffoon, and my occasional “on” days showed the world that I was truly sincere.

    My difficulties with balance became, for my friends and peers, a refreshing and “self-aware” slapstick. My difficulties regarding focus and cognitive latency/inconsistency became the product of “too many drugs” that I almost never actually used. Playing to the absurdity that, let’s face it, is EVERYWHERE in life, would offer a suitable ostensible pretext for traits and behaviors whose genuine origins I dared not to reveal.

    (An example: Dragging on my left side would often result in my shoe falling from my foot or getting “caught up” in some way; on one particular occasion, this occurred before a crowd of people in a very public place; out of desperation, I lifted my shoe from the ground, said something about “embracing the eternal ‘yes’,” and hurled it into a nearby creek, right in front of everyone. They cheered, and a few followed suit. Shoe-throwing then became a celebratory tradition in all sorts of situations.)

    Adults beheld this “change” in me with dismay, but I was so disgusted with them for never taking me seriously that I ambivalently relished it. This feckless mock-irreverence, however, was not sustainable into adult life, and when I was diagnosed (finally) at the age of 23, during my final semester of graduate school, I no longer had any idea of whom I actually was.

    I’ll stop recounting there, because I’ve gone on for way too long, but not before getting somewhere with the following:

    I deal with MS and its horrid, unpredictable repercussions with HUMOR. What’s the alternative, really?

    When I’m having an off day, and somebody asks,
    “How’s it going today?”
    I’ll say something snarky and open-ended like,
    “I feel like Milli Vanilli sounds. You?”
    And it deflects the onus of disclosure toward someone that might’ve just wanted something like
    “Fine. You?”
    And you’re not being deceitful. But you’re preserving the dignity of how you’re doing.

    I have to go (my library computer time is up), but you get the idea: Humanity toward yourself.

  • Lefty Lib
    3 years ago

    Thankfully, your cognitive skills “appear” to be fine! Wonderful response…

  • Heather
    3 years ago

    Wow. Humanity towards yourself. YES.

  • Susan Elizabeth
    3 years ago

    I too avoid going into details for lots of reasons, including not wanting to waste my energy or words (which often get lost) on explanations.

    I would like to see a therapist to dump some of these feelings. I don’t want to burden my husband (of >than 30 years and is wonderfully supportive) or my grown children. The complaints not only get old for everyone else but they do for me, too.

    Unfortunately I can’t find a therapist near me who specializes in progressive or chronic illnesses, just lots of marriage counselors and those dealing with various addictions.

    Keep your chin up, Matt, you’re a wonderful writer.

  • Lefty Lib
    3 years ago

    One time, I was fortunate to find a group that had therapists who dealt with patients w/MS. It was short-lived – up to 20 sessions – but it was free. This was provided by Jewish Family Services in San Diego, CA after my local MS Society referred me.

    Currently I am seeing a therapist that has no experience w/MS and it’s been more difficult with her because she doesn’t know enough about what it does to our psyche. But sometimes that’s not as important as it is to just get to talk to someone who will hear you out on a regular basis.

  • Matt Allen G author
    3 years ago

    Wow, I completely didn’t even think to mention that; I get tired of hearing MYSELF complain!

  • Benb
    3 years ago

    Hi there, Susan Elizabeth–

    Sorry to trouble you, and not wanting at all to intrude, but where do you reside?

    [I ask in response to your remarks about therapy, etc.]

    Kind Regards,
    Benb

  • 805swan
    3 years ago

    I couldn’t have said it better, if I tried. The mask. The preservation of self. To protect those who love you and whom you love.

    Thank you sharing!

  • Matt Allen G author
    3 years ago

    Thank you for reading!

  • Lisa M
    3 years ago

    Ohhh yeah, No I was guilty of this, all the time when I was first DX and even for the first few years, but not so much anymore.

    Don’t get me wrong, I don’t tell everything but I do say Uhhh, been better,not too shabby or if Im in a mood, I might say, Livin the dream…..If its family or friend, I may just say, oh, vertigo from hell, numb hands, or legs feel like cement, How bout you?

    I think for the most part, I just say it like it is anymore, not to sound horrible but I just can’t worry about how it might affect the other person, if ya don’t really wanna know, then don’t ask.

    I admit I used to hide behind the fake smiley mask but it takes too much energy, I, by my own choice have steered clear of old friendS who were more negative then I am their not living with MS,ya know?!

  • Matt Allen G author
    3 years ago

    Interesting, I find it takes too much energy to NOT put a “mak” on, but yes, I know what you mean,

  • Lisa M
    3 years ago

    Ohh, I need to clarify, I didn’t mean to say my friends were negative to me,I meant more THEY were negative about their own life, I now choose to distance myself from those “friends”

    I have a handful of real, true friends, all I really need.

  • JULIE SAVENE
    3 years ago

    Most of the time I just tell people who ask that ‘I am here”. That sums it up well, better than explaining if I am really having a bad day!

  • Matt Allen G author
    3 years ago

    yeah, don’t get me started on my smart remarks haha…

  • giraffe516
    3 years ago

    I am guilty of this all the time. It’s easier to say I am good rather than say how I really am. I have lost So much since I got sick, independence, friends, jobs, boyfriend…I rather present a “happy face” rather than state how I truly am in fear of alienating more people!

  • Matt Allen G author
    3 years ago

    yeah, same here, I just don’t want to come off like a Debby Downer.

  • skcullers
    3 years ago

    You are more polite them I am! I usually say thanks for asking but I feel like shit! Maybe get away with it now after 26 years since I am a grey haired older woman!

  • Lefty Lib
    3 years ago

    Yeah, I should try that! About 26 years for me too. Though at this point, not too many really ask anymore. They know their likely to get an earful and just avoid talking or keeping in touch.

    I guess this is just normal for others, and I try to put myself in their shoes to see if I might do the same without the knowledge I now have. But I still arrive at the same conclusion every time. I could not ignore someone I truly cared for even if they complained a lot.

  • Matt Allen G author
    3 years ago

    haha I want to say that so often, it is just easier right? But I am too polite, maybe that is what is tiring?

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