The problem with chronic illness and social media

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

the problem with chronic illness and social media #caregiver #struggle #chronicillness #writer #hope #chronic #faith #watching #prayer

That I believe this might come as a surprise, due to the slight fact that this website is full of articles!

Not to mention, I have associated facebook pages, groups, pinterest, google plus and twitter accounts! That’s a lot of social media.

Yet 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’m posting this here, and on Facebook and twitter and pinterest and all of the other social media places, in the hope that perhaps other people find it scary too.

What will people think about me if I share about chronic illness on social media?

The truth is, no one can 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 what they post online? In one sense it is possible to get to know someone through their blog posts or their twitter retweets – yet in another sense it really, really isn’t.

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 or boring or melancholy or hyper-critical or hyper-religious (is that even a thing?)?

What if people begin to believe I always get it right, that I’m always caring or always practice what I preach?

These things scare me.

And yet, the fact that they scare me, scares me too!

Because in the end… does it matter what other people think? I know it doesn’t (but often I care about it anyway).

What matters is who God knows I am, not what other people think I am. And who am I? I am a sinner. I am a selfish, heartless rebel who hated God and cared only about my own pleasures until He stepped down from heaven and saved me.

And now I’m saved, I have a heart which longs (sometimes) to do good but is unable to. My heart still cares about what other people think and wants to protect my ego, my pride, my image (how disgusting).

Yet I have a soul which is saved for heaven, and nothing can drag it out of Christ’s fingers.

Each time I share on social media I have to remind myself that what people think does not matter. Even what I think does not matter!

What matters is God using my life for His glory.

Will posting online about chronic illness 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 is even more true for me, because I’m not writing a fantasy trilogy. Instead I write non-fiction pieces about issues I and people around me struggle with… and so the parallels between my posts and my life are a bit more easily drawn.

When I share on social media, I sometimes wonder: what if people read this and think I’m criticising or blaming my sick family members? What if they look at my loved ones differently because of what I write?

All my posts are a reaction to my life, but they are not all individual reactions, and I would hate, hate, hate people to think so.

And yet, there’s every chance they will.

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?

Sharing about chronic illness on social media is hard. We are afraid people will judge us, or we will come across as shallow and naive. We don't want to be misunderstood.
I feel agonized just thinking that someone might feel that way.

Because it’s absolutely not what I intend. I cannot speak for anyone except myself. I cannot write your experiences, only my own.

In Sherlock Holmes (2009), a characters says, “we don’t expect you to share our faith, merely our fears”.

In the same way, I do not expect to be able to write out your heart in tiny black characters on a white screen.

Only God can do that.

So when I share online about chronic illness, I have to remember the outcomes are in God’s hands. I cannot change or control other people’s hearts, just as I cannot write them out. I can only let mine bleed a little, and pray that it would be for the building up, not the tearing down, of my neighbours.

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.

Without likening my blog posts with playing a part (because that is not true), I nevertheless fear that they will change me.

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 is again a selfish longing – I want an expansive picture of myself, not a narrow, focussed one.

On the other hand, this is a good fear to have. Because I was not created to be ‘the girl who writes about chronic illness and Watching’, and so that is not what I should become.

I was created to mirror Christ and in doing so, point to a God who is glorious above all things. I was created to live for Him – not my blog. I was formed to direct people towards His sacrifice, not a webpage somewhat romantically named ‘’.

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. Whether this website flourishes or fails, it will not impact my identity.

Christ is my identity and He’s not going anywhere.

social media chronic illness #chronicillness #suffering #loneliness #caregiver #pain #caregiving #spoonie #faith #God #Hope social media chronic illness #chronicillness #suffering #loneliness #caregiver #pain #caregiving #spoonie #faith #God #Hope

Sharing about chronic illness on social media IS difficult (but it needn’t be)

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

My friends, this is wrong.

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.

My friends, this is wrong.

I have been given the amazing opportunity to share about chronic illness and Watching, but in order to take hold of it with open hands, I need to take hold of God first. I must be willing to be vulnerable, because Jesus made himself vulnerable on the cross for me.

To follow in His steps this way is a boundless blessing and a difficult task.

Let’s pray for others and for ourselves that we may not fall.

// What about you? Do you share your struggles with chronic illness on social media? Do you find it difficult?

PS: Enjoyed the post above? Get the next one delivered straight to you! Sign up for email notifications  

I’m also on Facebook, Pinterest & Twitter! Meet me there for more interesting reads, resources and community.

Author: Emily J. M.

Hi, I'm Emily. Two of my closest family members struggle with chronic illness, and I watch them. That's hard, and so I write about life as a 'Watcher', what it looks like to support them and find Hope.

8 thoughts on “The problem with chronic illness and social media”

  1. Don’t worry so much, as you sharing your struggles sometimes gives a voice to others struggles that they are unable to put into words.

  2. Being vulnerable online is something I think many bloggers struggle with and I can only imagine that dealing with the subject of illness one would be even much so. Yet we never know just how much someone else may need to hear/see our words. Keep shining the light.

  3. Marvelous and, in my opinion, quite accurate. I DO suffer from a menagerie of chronic illnesses ( unfortunately THEY still haven’t given the down and dirty diagnosis). I have no friends. Sure I have my Facebook buddies from high school, the relationship doesn’t exceed just…That. My family? I learned just this evening that my niece had her 5th birthday party today. Awesome. Glad the fam had a great time. I will save the gift and re-write the envelope so it’s mailable. I have a sister and parents who just don’t have the want, care, need to even be educated. No phone calls…Nothing. I made the choice this year to not participate in any holiday dinners with them since I knew it would be to taxing on my mental and physical health.
    It is good to read about real people and real experiences. I had great coping skills that I utilized from May 2010 up until February 2017. Since then, I NEED new skills. What works for one, doesn’t always work for all. And the illnesses are being shot rapid fire at me. My mental health can’t keep up with the physical illnesses I’m being diagnosed with! What do you do? As a former medical employee of 18 years knows….There is so much garbage on the internet, that you have to ensure you are looking at a reputable organization for info. I look forward to your other writings, but mostly…Thank you and God bless.

    1. Hi Julie! Thank you so much for sharing your journey. It sounds like such an ongoing battle. I hope this blog can be a little bit of the support you need, and pray that God will send people into your life soon. It can be so lonely, especially as no one really knows what it’s like until they’ve been through the same situation. I feel you – the internet can be wonderful and awful – there’s some truly terrifying/depressing forums out there! May God be your strength and stay, your hope and your encouragement.

Thoughts? I'd love to hear from you, friend.