The Battles You Never See

“Be [kind], for everyone you meet is fighting a hard battle.”

Recently, I’ve seen this (usually misattributed) quote making its rounds on social media.

It’s a laudable sentiment. One we should all practice. It also strikes me that it’s easy to appreciate, in the abstract, but difficult to understand in real life terms.

I’ve lived with MS for decades. I’m not special. Half of all Americans live with a chronic health diagnosis. 96% of us have conditions that are invisible to others. Like many, there is no medical cure for what I have — or it wouldn’t be “chronic.”

But we’re still human. We still have hopes and dreams. We still must build the best lives we can. We still have so much to contribute.

I don’t know anyone else’s battles, but I can share a bit about mine.

Yet, this isn’t about me. It’s about my hope that we can create a world where everyone is more honest about the battles we face, and everyone is kinder and more supportive in their recognition.

If I can be one voice in the chorus of millions who stand up and say, “this is the reality of what I live,” perhaps one more voice — and another — will also chime in.

Since 1965, the “modern diagnostic criteria for MS require the following: Objective evidence of two separate CNS lesions compatible with MS and separated both in space and time of occurrence. Other potential causes for the CNS lesions must have been ruled out or excluded.”

That’s it. At least two lesions from different times, and you have MS. Multiple sclerosis is just some tiny patches of faulty wiring in the central exchange of a body’s electrical system.

Multiple sclerosis is a confusing condition, partly because the damage happens in our brains and spinal cords, so you can’t see what’s happening in our experience. But it’s also confusing because the symptoms can come and go. Even the symptoms that stick around vary in their effects and intensity.

Because MS destroys a central nervous system, it can affect anything we think, feel, sense, experience, or (try to) do. It’s an unpredictable source of ongoing distress and trauma without end. Thus, it can result in follow on symptoms — either because of direct damage or repeated traumatic experience.

The medical signs and symptoms also don’t include the far reaching life consequences of living with a serious medical condition that has no cure. We try the best we can every day and still lose family, friends, jobs, experiences, and opportunities who simply can’t handle sharing our experiences or won’t adapt to allow our inclusion.

Now, pause for just one minute of your life and really ponder this list. Not because I want you to understand my circumstances — you might not even know me. But because every second person you meet likely has a similar list they’re keeping quiet about. Yet all of us are still showing up to life every day and trying our best.

Imagine that you’re always in pain. You’ll never look forward to a day without it. It’s been so long that you can’t even remember what a pain-free day feels like. Imagine that, when you wake from a good night’s sleep, you’re still tired. Tired is the best you can ever look forward to. Imagine that you’ve itched all over your body for the last thirty years. Scratching does nothing because the “itch” is in your brain. Imagine that you’re subject to wild waves of emotion that have nothing to do with how you really feel. Imagine that, this time, when confronted with a problem you’ve solved a thousand times before, your thoughts simply won’t connect. Imagine that you stand up to walk across the room, and your legs give out, leaving you in a heap until when or if they decide to work again. And the list goes on. You can count on nothing, because your world will be different tomorrow.

This is every day for me. But I’m still here and I’m still striving for the best possible life.

As I said, I’m not special. I can only speak to my battles. I can only encourage others to speak of theirs. I can only listen with empathy and try — and fail — to deeply understand the experience of their lives. And I can only remember that it’s never a contest. My battles might be easy for you to surmount. None of us will ever know. I only know that mine are difficult for me, and I trust that yours are also difficult for you.

You might look at this list and think, “why even bother?” But I have a good life — a great one. I love my life and I’m always trying to live it better. Life is a precious gift and it shouldn’t be wasted, even when we must work a little harder.

No matter your diagnosis, it’s your life. Life it well.

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