You Only Think You Know

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.

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.

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.

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.

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.