It's Okay to Not Be Okay

When the slings and arrows of multiple sclerosis (MS) are accompanied by the missiles and mortars the world seems to hurl our way on a recurring basis, I sometimes find that I just … can’t.

Overwhelming news cycles overlap with trying MS symptoms. Difficult financial times are laminated with impending dread. Increased family commitments occur simultaneously with a lack of ability to fulfill them. The next plane we have responsibility for is taking off as we’re still trying to land this one.

And, if we let it, the world around us will demand more even if we are pulling a muscle trying to meet its current demands.

Sometimes it’s all just too much, and though there are no time-outs once you’ve graduated the second grade, I sometimes have to toss a yellow flag before I’m forced to throw in the towel altogether.

Let’s Not Wait for Society to Decide We Can Take a Break

You hear the phrase off and on in the public domain: “It’s okay to not be okay” — often after someone has succumbed to their own demons when the rest of the world thought they were getting on just fine.

It’s a commentary on society that we have to hear that we have permission to not be 100 percent all of the time. That we hear it in such aftermaths shows just how far society seems to expect us to push ourselves before it’s acceptable to grant ourselves a bit of grace.

Well, if we’re going to get on with anything close to a normal life within the normal that is our new normal, we’re going to have to give ourselves authorization to take a pass when it’s required to live well, rather than when it’s the only lifeline to living at all.

We Need to Give Ourselves Permission to Slow Down

MS is a disease that can make just about every part of our lives more difficult — from getting out of bed at the beginning of the day to staying alert and awake until we’re back in it to every thought, movement, and intention in between.

Multiple sclerosis will rasp away at a positive attitude, plane away our intentions, and poke holes in the buckets in which we carry around our aspirations.

If the world won’t allow us to stop — or at least acknowledge that we must slow down — when the weight of it all has shackled itself to our ankles, then we have to give ourselves the permission that society seems unable to grant.

Not everyone understands the challenges of living with a difficult disease. And even though those people have created some sort of ideal for themselves and have dosed it up with some inspiration porn as to how they think we should fit into their narrative, it’s just not healthful for us to allow.

Some Days MS Is in Control

Some days — contrary to the old MS adage that “MS doesn’t have me; I have MS” — multiple sclerosis does have me.

It’s not because I’m not trying hard enough. It’s not the fault of my diet or exercise regime or attitude or anything within my control. Some days, I’m just not going to meet the lowest expectations, let alone live up to some inflated American exceptionalism.

And that’s okay.

For it not to be all right with someone — anyone — is a warning that they don’t get me and they don’t get my disease. And that means they’ll not get any of me, as those are the people I take off my list rather quickly after more than two decades of finding my way with MS in tow.

Repeat After Me: It’s Okay to Not Be Okay

If you’re having a rough patch — a day, a week, or longer — I’m sorry. Those of us with MS get it, because we’ve all had those. To say MS is a difficult disease to live with is a pithy aphorism if ever I’ve heard one … and I’ve heard my share.

If you’re not okay right now, that’s okay. I say so because we don’t hear it often enough. It seems like the sort of given that we wouldn’t have to utter, let alone one that would be withheld. But because the world won’t say it to us, we need to say it, understand it, and be willing to accept it: It’s okay to not be okay.

And if you sense that I, too, need to reread these words today, tomorrow, and probably a number of times over the next years … you’re right.

Wishing you and your family the best of health.



My book, Chef Interrupted, is available on Amazon. Follow me on the Life With MS Facebook page and on Twitter, and read more on Life With Multiple Sclerosis.

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