We never see the whole picture of MS, just our own little part

Ever since I learned how, I have enjoyed reading. My tastes have changed a little over the years, as has the way I read. I like the feel and smell of a real book, but I mostly use electronic devices these days because I can more easily see them, hold them, and turn their “pages.” I still have a collection of hardcover books and will doubtless continue to add to it, but I have completely embraced the convenience of e-books.

Many of the books on my shelf at home are ones I’ve read more than once and will probably read again. When it comes to a good book, I am not a “one and done” sort of guy. There is a certain comfort in familiarity, and rare is the story in which I can’t find something new every time I read it.

I encountered this recently when something I was reading referenced the old tale of “The Blind Men and the Elephant.” The story is often used to explain the difference between perception and reality, but as with a lot of things these days, I instantly saw multiple sclerosis (MS).

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No one person can see the whole picture

The story tells of six blind men who encounter an elephant. Each goes up to the animal, feels a portion of it with his hands, and declares that the elephant must be completely like the small part he’s encountered. The story ends with them arguing about what the animal is really like, even though none of them has a concept of the entire creature. A single man’s perception cannot convey the reality of the elephant.

In the same way, all of us with MS are often grasping around in the dark. I can describe my experiences with the disease to anyone willing to listen, but it won’t be the same experience had by anyone else. Only by combining our individual pictures will we ever see the entire animal. The fact that there are a lot more than six of us just complicates things.

I enjoy telling my own diagnosis story, and I increasingly like hearing about others’ journeys toward naming MS. What I’ve discovered is that we could not diagnose one another based solely on our own symptoms. Every single one of us has something important to add — another puzzle piece that gets us closer to seeing the whole picture.

The same goes for our MS treatments. Whether they are disease-modifying therapies or symptom-specific treatments, what works for me may not work for you, and vice versa. Beware of anyone who tells you that their way is the only way that works (especially if they are selling their way). In most cases, if not all, people who insist upon the virtues of their own technique can’t see and are blocking you from seeing the entire elephant.

One of the ways I’ve been very fortunate is that I haven’t run into a medical professional who implies, or flat-out says, that they know everything about MS. As I’ve said before, my neurologist has probably forgotten more about MS than I’ll ever know, but he’s humble enough to admit that he doesn’t know everything. Unfortunately, there are providers out there who, like the blind men in the story, feel that being questioned is the equivalent of being insulted.

I don’t look anything like the last person you met who happened to have MS. That doesn’t mean either of us has done anything wrong. All that any of us can do is tell you about the part of the elephant we’re touching. Any judgment or criticism of a different experience just keeps us from being able to see the entire animal.

If we’re afraid to share our stories and see MS through someone else’s eyes, we will never accumulate the pieces necessary to see the whole puzzle.

I’m not sure what part of the elephant I’m touching, or if it’s even an elephant. I suspect it’s more along the lines of a cat — a very grumpy cat that doesn’t like being touched. If it is a cat, then I’ve either got its butt or one of the scratching or biting parts, and none of those options are what you want to grab in the dark.

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, and are intended to spark discussion about issues pertaining to multiple sclerosis.