When I'm Asked 'How Are You?' as a Person With Multiple Sclerosis

I am always asked how I am feeling. I’ve been diagnosed with multiple sclerosis (MS) for just over a year, and I’m finding that question harder and harder to answer.

My thoughts have turned in on themselves. You ask the simple question of “How are you?” and I ask myself a thousand more before I can answer you.

“Do you want to know?”

“How did I answer you last time?”

“Do you know I have MS?”

“Am I prepared for your suggestions?”

“Are you tired of hearing it?”

“Are you listening?”

I fumble. “I’m OK?”

You sometimes nod. You sometimes press for more.

I’m finding that the hardest thing about being sick is that I don’t know how I am.

I never feel “good.” I’m always in pain. I’m always exhausted.

I’m finding that you have expected me to be better. It’s been a year and the same answers are disappointing. I’m even learning that some of you no longer believe me.

For some, I know I have made you mourn with me. This has made me sorry. I’m sorry I don’t always have the answers. I’m sorry I’m constantly canceling, and I’m sorry I’m sometimes not as available as I once was. I’m sorry if my journey has made you cry or doubt me. I’m sorry I’ve changed.

I understand this may all be internal. Please understand this is what chronic illness does to me. I’m now constantly questioning myself, my value, my contribution to society.

I find myself doubting everything. I doubt all my answers. I doubt all I once knew about myself.

I don’t know how I am. I don’t even know how to be who I’ve become. I was once secure in the girl I believe God had made me, and now I’m trying to navigate this new version to find myself again.

Do you feel lost sometimes, too?

I’ve found some help in my tribe. My tribe consists of those people who are like family. My best friends, my counselor, my sisters, my mom, my husband. These are the people I count on to speak light into my darkness.

If that fails, and it does, I watch ridiculousness: “Miranda” (YouTube and Hulu), “Duck Dynasty” (cable), “The IT Crowd” (Netflix), “The Money Pit.” I do something that helps me think of nothing and, in that moment, my pain and anxiety go away.

I know in my brain that, even now, when my days are hard and I question everything, there is hope.

My friend says that there are no bad days — just bad moments in a good day.

That helps me.

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Michael Wentink was diagnosed with multiple sclerosis in 2008. He was a director at a Fortune 500 company, has an MBA, and is a father of two children. Follow Michael’s journey at: www.mjwentink.com twitter.com/mjwentink
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