The Fears I Have as a Caregiver When I Share About Chronic Illness on Social Media

Sharing about chronic illness on social media is difficult. Particularly when you are only watching someone else’s battle.

Perhaps this admission might come as a surprise – here I am publishing this online! Not only that, but I am active on Twitter, Facebook, Pinterest and have my own blog.

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So what am I talking about?

The truth is, each time I share about the place of chronic illness in my life (as someone who has sick family members, but is not ill myself), I struggle. It’s a hard topic to think and talk about – let alone share online with everyone and anyone.

Of course, I share because I want to. It is an immeasurable blessing, and in fact is so much part of who I am, I feel I can’t not share… but I still find it a battle. And so I write this in the hope that perhaps other people find it scary too.

What will people think about me? None of us completely understand someone else. Even friends I have known for my entire life still manage to surprise me. How much more is this true for someone we only know through social media?

When I share about chronic illness online, I’m afraid people will judge me. I’m afraid they will draw conclusions, and I’m afraid those conclusions won’t be flattering.

More than that, I’m afraid they won’t be accurate.

What if people read my blog and suspect I go through my day serious-hearted and solemn? What if people peruse my posts and begin to suspect I’m actually exceedingly immature? What if they think I’m pretentious, boring, melancholy, hyper-critical or hyper-religious? What if people begin to believe I always get it right, that I’m always caring or always practice what I preach?

This scares me.

Some days I’m tired of being misunderstood. Exhausted from explaining the complexities of my loved one’s struggles. I want to throw in the towel, and shout, “No more social media! No more communication!”

And so I need to constantly remind myself that what people think about me does not matter. Even what I think about myself does not matter. What matters is reaching out in love, and letting my life be used however I believe God desires.

What if I offend someone?

It’s sure to happen. You see, my writing rubs very closely against my life. That’s true for every writer – they say that some of the author subsides in every piece of work they produce. Yet this holds an even greater element of truth for us, because we are not writing fantasy trilogies. Instead we write about issues we and our loved ones struggle with… and so the parallels between our words and our lives are very easily drawn.

When I share on social media, I sometimes wonder: what if people will read this and think I’m criticizing or blaming my sick family members? Will they look at my sick mother differently because of the words I’ve typed?

Or what if my readers are offended by the thoughts and realities I share? What if they feel I am belittling their lives, or own personal struggles? What if I am insensitive or naïve?

The very thought agonizes me. I never intent to offend. I cannot speak for anyone except myself. I cannot write your heart in tiny black characters on a white screen, only my own.

So when I share about chronic illness online, I have to remember the outcome is not in my hands. I cannot change or control other people’s reactions. I can only let mine bleed a little, and pray that it would be for the building up, not the tearing down, of my neighbors.

What if sharing on social media changes me?

They say some actors play a part for so long that they become the character. It takes over their personality. While I am not playing a part when I write, I still have this fear.

I worry I will become “the girl who writes about watching chronic illness,” rather than “the girl who is a lot of other things, but also writes about watching chronic illness.”

On one hand, this can feel like a a selfish longing – I want an expansive picture of myself, not a narrow, focussed one. On the other hand, it is a good fear to have. I was not created to be “the girl who writes about chronic illness,” and so that is not what I should become.

I am more than someone who writes about chronic illness, and sometimes I need to remind myself of that.

Each time I share on social media I try and remember why I’m doing this, and what I expect out of it. This is not for myself. This is not my identity. This is not my future. It may be part of it – but it is not all of it.

Why do I share on social media?

Most of my fears regarding posting online revolve around myself. My desire for a good reputation, a contented ego, an easy life.

Each time I post these fears crowd around me. They want to stop me posting, or they only want me to post when I feel it will benefit me.

I have been given the amazing opportunity to share about chronic illness, but in order to take hold of it with open hands, I need to let go of myself first. I need to be willing to be vulnerable, and willing to expose my fears and failings so that someone else may be encouraged.

I post on social media in the hope that just one other person might read and say, “Me too.”