You Only Think You Know
When I tell people I have multiple sclerosis, I usually get one of three responses:
• “Oh, no! I feel so bad for you!” (Pity)
• “Is that the one with the telethon?” (Confusion)
• “I know all about that disease! My sister-in-law’s cousin’s college roommate has it!” (Presumption)
I think that of the three, presumption irritates me the most. Pity is annoying, too, don’t get me wrong. However, there’s just something about a person who reckons that because some friend or relative has a disease, they understand what life with that ailment must be like for every person who has it. They may know about it, but living with it is a horse of a different color. I used to snap at anyone who made such a statement, but I’ve figured out a better way to deal with it: popular culture.
I ask the person to think of it this way: Is there a book that is familiar to you, one you enjoy though you’ve never actually read it? For instance, many people fall in love with movies or television shows based on novels and short stories. Take “Willy Wonka and the Chocolate Factory” for instance. It’s based on “Charlie and the Chocolate Factory,” by Roald Dahl. (He hated the Gene Wilder version by the way!) Everyone thinks they know the story, but there are many differences between the two versions. The same goes for “Rita Hayworth and Shawshank Redemption.” I adore the film version starring Tim Robbins and Morgan Freeman, but the original novella by Stephen King was changed in several substantive ways to get the final cinematic result. It’s easy to think you “get” a book you’ve never laid eyes on … until you actually read it cover-to-cover.
I recently had an experience with this with “One Flew Over the Cuckoo’s Nest,” by Ken Kesey. Everyone knows the iconic film starring Jack Nicholson. It is great in its own right (and won several Academy Awards in 1975) and has long been a favorite of mine. However, after reading the original text, I have to say that I agree with Roger Ebert, who said of the film, “[It is] so good in so many of its parts that there’s a temptation to forgive it when it goes wrong. But it does go wrong, insisting on making larger points than its story really should carry, so that at the end, the human qualities of the characters get lost in the significance of it all.”
The movie is about standing up to the establishment and fighting for your rights as an individual, and that theme is certainly present in the book. But the text is so much more than that! It’s such a tender and supremely human book — a story of brokenness and acceptance and joy and what it means to be free. Kesey puts some beautiful text in the mouth of Chief Bromden, the narrator — so clear and full of longing it about breaks your heart to read it. Honestly, the book just sings. It’s so much better, richer, more truthful, and more painful than the movie ever could be.
That’s the difference between knowing about MS and living with it every day. Life is harder than most people know, but there’s also a strength and a “realness” to it that most people will never understand. And it’s not their fault. They simply can’t grasp the sum total of MS because it isn’t part of their day-to-day existence. It doesn’t impact choices about their careers, families, or activities. They don’t have to plan around it or carry around the stress it causes in the back of their minds. So, I’ve decided that rather than lose my temper, the best thing I can do is explain what they can never grasp using language they perfectly comprehend.
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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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Comments
Teresa Lawson
WOW! Jamie! Great analogy to movies and books and what we think we know ;
" Everyone thinks they know the story, but there are many differences between the two versions."
When it comes to talking about my MS, most people mean well. But sometimes it is just too painful for them to hear the truth, so they are OK with language they can grasp, or an "edited version" of my reality. Honestly, for me, it would take too much energy to tell them the whole truth and nothing but the truth. That depth I share with very few. Thanks for your beautifully written composition.
Jamie Hughes
Thanks, Teresa! I want to be a good advocate for myself and other MS patients, but sometimes it's like speaking a foreign language with folks. Glad to know the idea was a useful one for you!
D King Miller
Absolutely the best explanation of MS. Diagnosed three years ago and as a career nurse it’s been a challenge. This analogy has brought me clarity that I have to admit.
Thank you
Jamie Hughes
So glad it resonated, Teresa! And yes, it is very draining to explain it top to bottom. It's smart to reserve the whole story for those who care enough to listen and to know it all. Glad you have those folks in your life.
Jeff Bowden
Oh so true! After living with MS for forty one years I've grown so tired of those responses that I just don't tell anyone.
Over the years, in the very rare instance I've felt that the person really needed to know (significant others, business partners, etc.) I've learned to watch their eyes. I've heard the "Presumption" a couple of times, the "Confusion" some; but the most frequent response I get is just "Oh", followed by silence. I wait patiently for a question or comment; I have the explanations ready, actual facts to assure them I'm still the same person.
But their faces becomes frozen, the smile stays the same. But the telling response is always in their eyes; they grow wide, they show caution, and become defensive. Then, as if to reassure me, they say something to the effect of: "I'm your friend, you can count on me always; (a short pause) but right now I have to, uh, uh, rearrange my sock drawer and, uh, wash my hair. But I'm here, call me when you need me."
The reality is they don't know how to respond. In our commercial driven world for a program to be successful (i.e. profitable) TV and movies must end in a happy ending. A quick two hour voyeuristic glimpse into a glossed over rewritten version the writers pain requires little emotional attachment, since you already know it will turn out well. .
But where the investment of many hours into reading even a novella (i.e. Truman Capote's "Breakfast at Tiffany's", which the book ends in Holly Golightly just disappearing), a person now is involved in emotionally feeling, the pathos in her life. It would never have been a commercially successful movie as written, the paying movie-going public simply would not accept it.
We are not conditioned to accept others with challenges. The poignancy of reality does not enter into the escapism of our entertainment driven world, where advertisements interrupt your involvement with a two minute commercial pause where you anxiously await the miraculous resurrection of protagonist, which you surreptitiously know is about to happen.
That is the reality we are presented with, not the shock that others lives may not be perfect. Incurable illnesses just don't fit into that world. And sadly, I've found this true even among those also desperately struggling against MS and other illnesses, we respond in similar fashion. Such is life.
Jamie Hughes
So true, Jeff. We're not trained and honed to expect and/or deal with challenges. You're absolutely right. I too have found that readers, those who take on challenging books, are better with things like MS. Those who prefer the fluffier, bite-sized entertainment tend not to stick around through the hard stuff--especially when there's no "payoff" or "happy ending." Well said, sir.
Sue Kramss
After having MS for forty years, I must say I’m taken back by the extent of anger and outrage upon the part of other MSers towards those not familar with MS. The idea of being hostile, resentful, or insulted when people do not respond appropriately or as we wish, is foreign to me. People are just human and we all occasionally are at a lost for the right words when communicating. Hearing about chronic or crippling diseases remind us all of how fragile life and good health is.
It seems that being dxd with MS gives patients the right to a sense of entitlement to edit, judge and condemn all those that simply don’t know much about the condition. All to often the war cry goes out - “they have no idea”, “they don’t get it till they get it”, “they are morons”. I have read responses that are outright hateful and threatening, such as “if another idiot says.... I’ll punch them in the throat.” I have also read utterly ignorant comments like, “ I hate that my family pays more attention to my sister who is in stage 4 pancreatic cancer. I suffer from an incurable disease. I wish I had cancer instead because that can be cured!”
I understand the frustration of having a condition that is misunderstood, invisible, and unknown to so many, but that has opened so many doors for me to speak on the topic, making new friends along the way. If someone refuses to accept my explanation or behaves with disrespect, I walk away knowing that’s their problem, their Karma, not mine.
Why do we expect everyone to have the answers, the right words? Why should they understate day when medical science had yet to figure out this disease? And really... are we so infallible that we have never put our foot in our mouth when trying to respond to something we don’t understand? You would not be human if it has never happened to you.
Jamie Hughes
I concur 100% with you. It is hard to explain it, but it's up to us to try...and to do so with as much kindness as we can. We are ambassadors in a way. WE make the disease visible. It's our cross to bear in more ways than one. Hopefully, this example I've given here will give some folks who are frustrated a new way to frame the discussion. Thanks for commenting!
Judy
That’s right. Everybody didn’t understand it when they were dxd either and have had to learn of the disease as they have read about it and lived with it
Debbi
I love your post! ❤️❤️❤️ Bravo!!! I've said basically the same thing in other posts.... that we can be so arrogant to expect people to struggle to grasp our problems. Those little children with MD still grip my heart, yet I can't say I have lived "their" pain. Thank you - maybe others will see that everyone has some burden.... do we try to understand THEIRS?
Jamie Hughes
It's all about listening (and loving) well. Far too little of that going on these days. Let it begin with me.
Michelle
I have had MS since I was 24 and I’m 49 now. I have found using humor to explain how I feel works best for me. Example my right side from my waist down is fairly numb so I tend to lean to the right when I sit so I explain that it feels like my left butt check is a full ballon and my right butt check feels like is going flat when I sit so that’s why I have a hard time getting comfortable when I sit down and tend to lean.
Jamie Hughes
Michelle, humor is a great way to get the job done!
Lisa Peterson
Thank you so much, Jamie! I absolutely love the way you think! I have such a difficult time explaining my disease with “my people,” and now, my son has been dx’d with Crohn’s Disease. I’m trying my hardest to remember/realize that though BOTH of our diseases are a part of the unfortunate “Silent Disease” club, that his journey is his own! I’m trying to balance the information I have to impart to him (as someone who “gets it”) with the knowledge that his journey MAY have similarities, but will be solely his own.
Lisa Peterson
Thank you so much, Jamie! I absolutely love the way you think! I have such a difficult time explaining my disease with “my people,” and now, my son has been dx’d with Crohn’s Disease. I’m trying my hardest to remember/realize that although BOTH of our diseases are a part of the unfortunate “Silent Disease” club, that HIS journey is his and his alone. I’m trying to balance the information that I have to impart to him (as someone who “gets it”), with the knowledge that his journey will undoubtably be very different than mine. We MAY experience core similarities in the general “script” of our diseases, so to speak, but his personal ride & journey will be his & his alone to own, navigate & experience.
Jamie Hughes
Yay! So glad the article helped you find a way to help relate to others. Peace be to you and your son on your respective journeys!