Criticised As A Chronic Illness Blogger For Not Showing Enough Sickness

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Criticism can be unpleasant to deal with, whether it’s insulting to the point of being abusive, or merely critical without intended harm. The writers, social media users, influencers and bloggers putting themselves out there online can be in the firing line for those who like to criticise . On occasion, you may find that someone takes umbrage with you and your content and thinks it appropriate to let you know they don’t like something. This happened to me again recently. Apparently, as a chronic illness blogger, I don’t talk constantly about my symptoms and how difficult life is, nor do I show enough ‘sick’ photos of myself for their liking.

The Critique :

I’ve had criticism before from out of left field, randomly and strangely, like being criticised for swearing, and criticised for saying I’m struggling when instead I should be grateful that at least I don’t have cancer. This time, it was a bit different. 

Someone contacted me recently to let me know their thoughts regarding what I share on InvisiblyMe and the associated social media. This person appears to have been a reader for a while and hasn’t said anything before, but they clearly felt their criticism was worth venting right now. Apparently, as a chronic illness blogger, my written posts and photos of myself don’t reflect the reality of living with illness, disability and pain. Huh?

I think this person is basically saying that the few photos of myself that see the light of day on my blog or Instagram show me looking “normal” and not ill. Maybe they think I’m not sick enough for their liking, but I took it more as a critique that I should be writing about my symptoms and how miserable I am, and showing photos looking sick. I’m not sure what they think “sick” looks like, and I’m not sure they would have considered this either.

I wonder if this person missed the posts I’ve done on invisible illness and how many people with chronic conditions actually look “fine” when they show themselves. You wouldn’t be able to tell they’re struggling and suffering. 

Or maybe this person doesn’t believe I’ve got any issues, which would be pretty weird. If I had the chance to go back in time and avoid ever having these health problems, I’d do it in a heartbeat. I didn’t choose this, nor do I want this. That’s just my personal feeling and I know not all “spoonies” would necessarily feel the same. 

This person seems to think my posts don’t show how bad the reality can be and also takes umbrage that I don’t disclose everything. They’re right, I don’t disclose everything. There are some things I don’t talk about and some things I can’t talk about, like my first surgery. Unfortunately, I’m a hypocrite as I truly believe there should be no shame or embarrassment with health problems, treatments you’ve had, or symptoms you experience, and yet there’s something I still can’t talk about. As for not showing the reality of how bad things are; if I were to do that, then every post could become a self-absorbed sob story about how unwell I am and how miserable I feel. Who wants to read that? Who wants to write like that? Not me. 

A Recent Visible Example Of Chronic Illness

I recently shared an incident that occurred on social media, deciding to do it as I was piqued by this person’s criticism shortly before. I was rudely awoken before 4am one morning with immense pain. So as not to wake my parents, I crept downstairs with great difficulty and got into the bathroom, figuring I’d wait it out and hope for the best. But then I suddenly got super sweaty, my hearing and vision went, and then so did I as I passed out. I didn’t make it out of the room and face planted the door handle with my full weight. I woke up in a heap on the floor, not quite knowing where I was. 

I couldn’t have been out for long so I imagine it would have been seconds or maybe minutes. When I was able to pull myself up, I eased out of the bathroom and seemed to wander through the kitchen and stood outside on the patio. My dad had got up by this point and was in the kitchen, so I know I apparently seemed very out of it, with blood running down my face. He didn’t think it important enough to check on me, but never mind. I wandered back upstairs and waited until I got my bearings and knew exactly where I was. I took a photo as proof for my memory. A little later, after wiping away more blood and making sure I wasn’t cross-eyed, I thought to hell with it, and posted it online. I’d never normally do it, mostly because it doesn’t cross my mind at a time like this. 

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A post shared by InvisiblyMe (@invisiblymeblog)

^ I’m sorry this photo is so horrifically huge. WP doesn’t seem to want to let me make Insta embeds smaller.

Even this photo doesn’t show you much other than wild hair. Maybe I shouldn’t have wiped away the blood so you’d see it running down my neck. Maybe I should have done a video so you could see how sweaty my hair really was. Maybe I should have taken photos inside my mouth the next day where it had swollen up. It still doesn’t tell you what happened or how I felt. No photo ever will. 

Why I Don’t Constantly Share The Ugly

I believe in showing and writing about the less popular aspects of life, the miserableness and difficulty that doesn’t necessarily get the views, but is, in my opinion, incredibly important. Some might see it as whinging but I see it as connecting to others who might feel have experienced something similar. 

When we feel bad in some way, perhaps because of our health and the situation we find ourselves in, many of us then compound this by instantly feeling bad for feeling bad. For instance, if you feel resentful for losing so much time and spending the only functional moments doing chores. Or if you find birthdays difficult, not because you’re having a toddler tantrum at not having a bunch of gifts to open, but because of the loss of friends and feeling behind in life. Or if you feel frustrated and disheartened by thinking you can’t have children, a partner and the career you wanted because your health won’t allow for it. 

Then you think – or someone unhelpfully tells you to consider – how others have it worse than you or how you should still be grateful for the things you do have. Guilt piles on top and now you feel even worse. It’s good to have perspective and to remember the things you can be glad about, but bloody hell. Your experience cannot be compared to someone else’s, it doesn’t work that way. You deserve to feel however you feel and not heap guilt on yourself for struggling from time to time. Knowing that others feel similarly to you in some way, and to be reminded that it’s okay, is important. 

But I will not write constantly about how miserable I may be because of my health, how my conditions affect me, how pain makes me want to jump out of a window. I will not write about feeling sorry for myself, because I don’t. I will not stop to think about getting a photo opportunity in while I’m throwing up my stomach lining or rolling around in bed with my insides twisted up. Funnily enough, I don’t think about, or have energy for, getting photos and Tweeting every moment of every day when I’m not well. I’d be doing it constantly. 

That would not help me, and it certainly wouldn’t help anyone else. 

I aim for balance – I believe in showing the good, bad and downright ugly of what we go through as individuals. But I wouldn’t focus solely on any part. I want InvisiblyMe to be a truthful, open (hypocritical withholding aside), and hopefully relatable in some way. I’d love for even one person to feel a little less alone as a result of something I share, because living with illness/pain/disability can be a lonely journey. 

Should I start getting my mum to photograph me when I feel like I’m dying? I don’t know, but I have no intention of doing so. Maybe I’ll start showing a little more of the horrible stuff, but it will always be balanced with advice articles, reviews, lighter posts. If you’re looking for a blogger to drown you in misery constantly and suggest life is over if you’re ill and in pain, then that’s not me, regardless of how I may personally be feeling. 

It’s Called Invisible Illness For A Reason

The very nature of so-called invisible illness means that what a person is going through isn’t immediately or obviously noticeable by looking at them. They could be feeling like utter hell, but look “fine” on the outside. Some may use mobility aids and other devices, that suggest something is awry, but not all. There can be signs and tells, like a frown with pain or randomly throwing up in public. How often will you see a chronically ill person display these signs or appear to be “chronically ill”? Likely not very often, if at all. What does “sick” look like? Like you usually look like, for the most part. You don’t turn into an ogre like something out of a horror film.

Many people living with health problems have spent their days trying to get on as best they can to get through the basics, not wanting to feel like a burden or draw attention to themselves. They become skilled at appearing “okay”. They likely won’t be seen when they can’t function enough to get out of bed or out of the house. Sometimes the question of “how are you” is just far too complicated and weighted to even consider answering anywhere near honestly, and thus “I’m fine” becomes the stock response. 

What is shown to others, both in person and online, is often a brief snapshot to show the less obviously ill or in pain version of ourselves. Much like how a lot of what’s shown on social media is only a snapshot of what someone wants you to see. You cannot accurately assume that someone is happy, successful and doing brilliantly because they show a continual flow of gorgeous photos looking joyful doing fun things. 

Facing Criticism As A People-Pleaser or “Sensitive Person”

Criticism can be unpleasant for most of us. Fortunately I’m not too bothered by this criticism, but it made me feel a bit defensive and question what I share. Other criticism has hit harder, and I’m sure others have likely received far more in the way of critique or even online abuse than I have over what they share online.

For the “people pleasers” among us, and those perhaps told they are “too sensitive” (like me), it can sting that bit more. To be criticised, especially when feedback is not requested, can feel like a personal attack, an insult that cuts deep even if it’s obviously inane and baseless. It could hurt all the more if you feel, accurately or not, that it holds a hint of truth. We don’t want to cause upset, we don’t want to be a failure; we want to be accepted and liked, we want to do well. We want to be everything to everyone, even if you realise it’s impossible. We can say we don’t care, that we’re tough and don’t need anyone’s approval, but often there’s a part of us that’s vulnerable to it.

To Blog Or Not To Blog 

When I first started this blog, I’d just had surgery for an ileostomy and thought I could raise a little awareness and write about the experience with a stoma bag and invisible illness. It gave me something to focus on when things were rocky, but I never thought I’d continue blogging. I figured a couple of months and I would have ditched it, putting it on the growing list of things I’m no good at. Turns out, I really liked being a part of this community, whether I was any good at blogging or not. So I stuck around and started to grow InvisiblyMe outside of a restrictive niche to encompass different aspects of health, chronic illness, lifestyle, etc. I wanted to move away from just personal experience and include more neutral content that can be informational and hopefully a little helpful in some way.

There have been a number of times where I’ve felt like giving it all up. The times when I get into that cycle of thinking I’m awful at it, that don’t have many followers, that everything I’m writing is pointless. Most bloggers go through this at times. The time after an awful experience with Lyrical Host, a website host provider, that was so angering that I wanted to give up and I felt stupid for having lost money to them. The biggest problem is when I’m snowed under with “stuff” to do and I can’t keep up; writing a post when your brain doesn’t wish to comply makes it a time-consuming process and it can start to feel hopeless the further behind you get. I’ve also questioned whether it’s worth it to share unpopular opinions and fight for what you believe in when you receive vitriol online, which is usually on social media or comments sections on news site. I wonder whether I should be voicing my opinions and standing up for what’s right when the bullies want to silence us. Then the quiet rebel in my head shouts, “fuck yes we should keep going!”.

So I keep going. In fact, the initial hopelessness after times like these often comes a fire to persevere and we find ourselves more motivated. Blogging the one thing I have that’s mine, that I’ve worked hard to accomplish, no matter what I or others may think of it. The blogging community is priceless and while I’ve been fortunate enough to make friends through the blogging that I can keep in touch with by email or on social media, to give up blogging would likely cut me off from this community and involvement in the lives and musings of others. To not blog would destroy the one achievement I have to show since my health went down the pan. To not blog would take away something I have to work on and towards, and the huge learning experience that it all affords. 

While running a blog, paying for it and dealing with the technical aspects can be stressful, there are always enough positives to outweigh this. I hope other bloggers can feel the same if they’re in doubt. Of course there will come a time to let blogging go and hopefully that’ll be a decision made for the best of reasons; instead of running away from something or letting self-doubt eat you up, letting go may be about starting on a new chapter or focusing your efforts elsewhere. 

Fellow Bloggers : Be Free To Be You 

I do appreciate workable criticism – if anyone has any suggestions about my site, content or social media, please do let me know. If you’d like to have a dig at me for any reason, feel free but remember that bloggers are just ordinary people, probably struggling far more than you realise. 

Bloggers need to adhere to the platforms guidelines and not be an arse to anyone else. But no blogger needs to adhere to someone’s wishes about what they write about or how they write. Much as we are all individuals and should live, speak, act and dress as we wish and to be who we are, bloggers are also free to do their own thing. If a reader doesn’t like it, that’s not your problem and the reader can choose to go elsewhere. Many bloggers will want to make their readers happy, myself included, but nobody should ask you to be anything but you.

Have you received criticism about your blog or other online content? Or do you think I should be sharing more of the reality of being chronically ill?

Caz  ♥

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