How to balance advocacy and privacy when living with a chronic illness

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There are days when it feels useful and authentic to share about my life with MS. In other cases, I prefer to keep the details to myself.

To share about chronic diseases in a public forum or not?

That is definitely not the question that Hamlet himself negotiates 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 through social media, blogs, and conversations with my friends, family, colleagues, and students feels like one Decision to my being.

Be public or private? Educate and advocate or carry on like nothing is wrong? Those are damn hard questions to answer.

How many people do I exist on social media. I take cute pictures of my children, post cute photos of my husband for our anniversary and regularly review films on my Instagram account. I mostly use Twitter for things related to teaching and the high school I work at.

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

It is natural to regret in life, but the person in charge of class reunions must numero uno regret it. I digress.

Occasionally to fairly often, I delve into social media vulnerabilities on a number of topics: mental health, grief, and of course, living with MS.

The decision to share or not is a very personal one. Someone who chooses to share in order to raise awareness is not better than someone who prefers to stay private. It’s not a question of morals.

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

Another part is the invisibility of MS. I’ve been fortunate that most of the time you can’t see that I have MS, and my disease-modifying therapy seems to be working. At the moment everything is going well, so to speak.

So as long as there is nothing really urgent share, I sometimes feel the need to document and share the everyday: pictures of myself during my monthly infusion on a hospital chair, in my peeling during my annual MRI, a day when I feel the oppressive cloud of tiredness.

It’s like telling everyone who listens: This is what it takes to keep my body going and this is where my body is when it’s working against me. You can’t see it so I have to write it and show it to you.

There are times when I speak freely, openly, and vulnerably about my entire journey or a particular battle with MS. There are other times that I don’t want to share. I see the sharing of my chronic illness more as a mountain range and less as a single peak that I want to conquer or climb.

I remember working on a ranch in Colorado the summer before my senior year of college. Several hikes took me to humble peaks where I could see the conical splendor of Pikes Peak in the distance. The other mountains were beautiful, but my gaze was drawn to Pikes Peak.

The sun always shines on the peaks, but without the mountain base in the shade there would be no peak, no majesty.

Part of having MS disease is deciding when to light up symptoms, flare-ups, and the prevention and maintenance needed to keep the body going through infusions, frequent injections, or taking daily pills.

Part of getting MS is deciding when to share when you are afraid and when you are feeling strong, and educating others about how best to convey empathy.

MS wants to be healthy, normal,and regular while at times he feels anything but scared, stressed, and exhausted. Sharing takes vulnerability, courage and time.

When I share, I have to suppress my need to please people and my fear of being seen as an attention-grabbing oversharer. Not everything I share will get across to everyone, and that’s fine. Reaching everyone is not the goal.

I was humbled and overwhelmed that the words I put on a page and posts and stories, whether silly or serious, made people feel like they were being seen, known, and understood. Every time I get feedback that something clicked or that I get words about someone else’s feelings, I know it’s worth sharing.

It is an impetus to move on, to keep shedding light on the difficult things.

I’ve heard from people here in town and even in Croatia. Sometimes the feedback moves me to tears. What’s more, I hear from people who don’t have MS but have learned or felt something, and as a trained teacher, it’s especially nice to know that I reach out and educate people.

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

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

After all, there are many posts and shares and blogs in the world. Sharing when I want to be quiet and private doesn’t feel very authentic.

Case in point: my brother-in-law recently died in a tragic accident. And I got used to my first month back to school in 15 months. And I spent many hours at school doing everything that had to do with going home (so many sweaty, dancing bodies).

I was some kind of wreck, and I didn’t want to or couldn’t share in a meaningful way. I was in survival mode and held together well, but I knew I was nowhere near great.

I started seeing my great advisor again, and while I didn’t shy away from reporting on my mental health issues, right now this feels too close to my home for sharing to feel right.

In case it is not obvious to share or not to share, one is from day to day and on a case by case basis. MS is not a formula (goodness, there is no reliable formula for MS) so it makes sense that my social media is sometimes overflowing with MS-related stories and sometimes it’s radio silence.

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

If you’re like me it helps to have a list. In general, when I choose to share, I stick to the following:

  • Authenticity: Is what I’m sharing authentic? Does it feel like me (That’s subjective, but I know myself, and I know when I’m feeling myself and when I’m not. People are good at sniffing out their own fakes.)
  • Advocacy and education: Is what I’m sharing helpful? Will it add entertainment or is it just noise?
  • Personality: I almost always inject humor into my stories. Not always – some are too scary or I haven’t had the gift of time and space yet – but almost everything I write “out there” is funny, or at least it is allegedly be funny. Humor eases tension, and I never want to preach or shame anyone. I never want pity.

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

I’m late for the party, but over the summer I read Amy Poehler’s memoir “Yes Please”. Much of it has stayed with me, but especially her words about sharing and vulnerability.

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

When she calls people “magic,” she doesn’t mean that these people have a secret. Rather, I think the magic of being vulnerable and sharing is that they make the magic of understanding and knowing possible. They make the invisible visible, the mysterious concrete and the unspeakable spoken.

It’s a paradox: it takes courage to be both public and private, and it’s actually magic, magic, magic.


Erin Vore is a high school English teacher and Enneagram Four who lives with her family in Ohio. When her nose isn’t in a book, she can usually be found hiking with her family, trying to keep her houseplants alive, or painting in her basement. A would-be comedian, she lives with MS, manages with a lot of humor and hopes to meet Tina Fey one day. You find them on Twitter or Instagram.



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