How I Balance Advocacy and Privacy Living with a Chronic Condition

Some days, sharing about my life with MS feels useful and authentic. Other times, I’d rather keep the details to myself.

To share or not to share about chronic illness on a public forum?

That is definitely not the question Hamlet soliloquized in Shakespeare’s play. But, close enough, because as one of the 2.3 million people living with multiple sclerosis (MS), the decision to share via social media, blogs, and conversation with my friends, family, co-workers, and students feels like a choice about my very being.

To be public or private? To educate and advocate or to carry on as though nothing is wrong? These are damn hard questions to answer.

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Why I tell my story

Like many people, I exist on social media. I take cute pictures of my kids, post sweet photos of my husband on our anniversary, and regularly review films on my Instagram account. I use Twitter mainly for things related to teaching and the high school where I work.

Facebook, my least favorite of the three, is like a barnacle attached to a blue whale. It’s there mainly because I made the mistake of becoming my high school’s senior class president in 1997, and I need some way of getting in touch with people every 5 to 10 years for class reunions.

It’s natural to have regrets in life but being the person responsible for class reunions has got to be regret numero uno. I digress.

Occasionally to somewhat frequently, I veer into social media vulnerability about any number of topics: mental health, grief, and of course, living with MS.

The decision to share or not is entirely personal. Someone who chooses to share in order to increase awareness is not better than someone who’d rather stay private. It’s not a question of morals.

Part of it is my personality (I’m an extrovert and Enneagram four), so the need to share and connect bubbles up in me from time to time.

Another part is the invisibility of MS. I have been fortunate in that most of the time you cannot see that I have MS, and my disease-modifying therapy seems to be working. Everything is, so to speak, going well right now.

So while there’s nothing really pressing to share, I sometimes feel the need to document and share the mundane: pictures of me at my monthly infusion in a hospital chair, in my scrubs at my yearly MRI, a day when I feel the oppressive cloud of fatigue.

It’s as if I’m saying to anyone who will listen: Here’s what it takes to keep my body running and here is my body when it is working against me. You can’t see it so I must write it and show you.

There are times I share freely, openly, and vulnerably about my overall journey or a particular struggle with MS. There are other times I do not want to share. I’ve come to see sharing about my chronic condition more as a mountain range, and less as a singular summit I wish to conquer or ascend.

I remember working at a dude ranch in Colorado the summer before my senior year of college. A number of hikes led me to modest summits where I could see the conical grandeur of Pikes Peak in the distance. The other mountains were gorgeous, but my eye was drawn to Pikes Peak.

The sun always shines on the peaks, but without the mountain base in the shadows, there’d be no peak, no majesty.

Part of having MS is deciding when to shine a light on symptoms, flare-ups, and the prevention and maintenance it takes to keep a body going via infusion, frequent injections, or the intake of daily pills.

Part of having MS is deciding when to share when you’re scared and when you’re feeling strong, and to educate others on how best to convey empathy.

Having MS is wanting to be healthy, normal, and regular while sometimes feeling anything but, not to mention terrified, stressed, and exhausted. Sharing takes vulnerability, guts, and time.

When to share, when to keep it to myself

When I share, I have to suppress my need to people please and my fear of being seen as an attention-seeking oversharer. Not everything I share will strike a chord with everyone, and that’s OK. Reaching everyone isn’t the goal.

I’ve been humbled and overwhelmed that the words I write on a page and posts and stories, whether they’re silly or serious, have made people feel seen, known, and understood. Every time I receive feedback that something clicked, or that I put words to what someone was feeling, I know sharing is worth it.

It’s a nudge to keep going, to keep shining a light on the hard things.

I’ve heard from people here in town and as far away as Croatia. Sometimes the feedback brings me to tears. Even more, I hear from people who don’t have MS but have learned or felt something, and as a trained teacher, it’s especially gratifying to know I’m reaching and educating people.

I hear from people with other chronic conditions or who love people with other chronic conditions that something stuck, was worded just right, that they felt exactly the same or that the words were exactly what they needed, and there’s just not much more I want or need to hear besides that to tell me that sharing is worth it.

On the other hand, I’m not always in the mood to share. Or it’s not the right time. Or I’m just struggling. That is OK. It’s valid.

After all, the world has plenty of posts and sharing and blogs. Sharing when I desire to be quiet and private doesn’t exactly feel authentic.

Case in point: Recently, my brother-in-law died in a tragic accident. And I was adjusting to my first month back to school in 15 months. And I was spending long hours at school doing all things homecoming (so many sweaty, dancing bodies).

I was kind of a wreck, and I didn’t want to or couldn’t share in any meaningful way. I was in survival mode, and I was holding together alright, but I knew I wasn’t great by any stretch of the word.

I started seeing my amazing counselor again, and though I’ve not shied away from sharing about my mental health struggles, this feels too close to home right now for sharing to feel right.

What guides my sharing

In case it isn’t obvious, to share or not to share is a day-by-day, case-by-case basis. MS isn’t a formula (goodness ever is there not a reliable formula for MS), so it makes sense that sometimes my social media feeds overflow with MS-related stories and sometimes there’s radio silence.

Sometimes I want to talk to friends or co-workers about what’s going on. Other times I just can’t.

If you are like me, it’s helpful to have a list. In general, I adhere to the following when deciding to share:

• Authenticity: Is what I’m sharing authentic? Does it feel like me? (This is subjective, but I know myself, and I know when I feel like myself and when I don’t. People are good at sniffing out their own forgeries.)
• Advocacy and education: Is what I’m sharing helpful? Will it add to the conversation or is it just noise?
• Personality: I almost always inject humor in my stories. Not always — some are too scary or I haven’t had the gift of time and space yet — but most everything I put “out there” is funny or is at least supposed to be funny. Humor defuses tension, and I never want to be preachy or shame anyone. I never want pity.

What keeps me sharing, what keeps me wanting to offer up my tiny little rock in a mountain range of stories, is that it’s making a difference. It makes a difference to me (sharing and writing is a healthy outlet and writing is a passion). And I know it’s making a difference to the people I’ve heard from.

There is magic in vulnerability

I’m late to the party, but over the summer I read Amy Poehler’s memoir “Yes Please.” So much of it stayed with me, but particularly her words about sharing and vulnerability.

Poehler writes that it’s “very hard to put yourself out there, it’s very hard to be vulnerable, but those people who do that are the dreamers, the thinkers and the creators. They are the magic people of the world.”

When she calls people “magic,” I don’t think she’s saying that those people have some secret. Rather, I think the magic in being vulnerable and in sharing is that they make the magic of feeling understood and known possible. They make the invisible visible, the mysterious concrete, and the unutterable spoken.

It’s a paradox: It takes guts to be both public and private, and it indeed is magic, magic, magic.

Article originally appeared on Novemeber 9, 2021 on Bezzy’s sister site, Healthline. Last medically reviewed on November 3, 2021.