Why chronically ill people are like icebergs


I shared a graphic about chronic illness on Facebook a few days ago (it's at the bottom of the post) and I made a throwaway comment about people with chronic illness being like icebergs. Only afterwards did I realise I'd unwittingly summed things up rather well. I seem to do that more by accident than by design. ;)

Like icebergs, you only see a little bit of us Spoonies on the surface, not the vast majority which lies hidden. Usually we hide things deliberately, and sometimes we plough that groove so well that we almost kid ourselves too. I'm a proud woman, and only James sees my daily struggles in full. I don't even want to confront them myself - I can only keep a symptom diary for a week or so before I abandon it. Counting the ways life is hard depresses the hell out of me. It's better to lose count of the ways life is no longer the same. No ill person wants to be the person wearing their body's failures on their sleeve 24-7. Few disabled people I know want to be defined by it - I know I don't. So you lie, to yourself and to everyone else, not about how ill you are, but about how ill you aren't.

You see me on this blog and on social media on the days when I get dressed. Lately that's 3 or 4 days a week where I have clean hair, makeup on and I look passably human. I do that for the blog, and for myself, so I can kid myself that I'm OK. You see, I look back on this blog as much as anyone else does. It's my biggest accomplishment, and I don't want to spoil too much of it with my reality.

You don't get to see me when I'm in my dressing gown all day, with lank hair and a dull face, unable to face the mirror let alone the world. You don't see the days where I'm too weak to shower, and I spray another lot of dry shampoo on my head, scrape my hair back into a ponytail and hope no one rings the doorbell. 

You see the photos from when I go out to pretty places. You don't see that I hate going out without James, and rarely do so unless I'm meeting a friend the moment I step out of the cab at the other end. You don't see that 99% of the time James drives me somewhere where I can walk on flat ground, to minimise the extra pain and suffering I'll be in later if I go up hill and down dale. There's always payback. There's no get out of jail free card with chronic illness.

I know what I look like the majority of the time and believe me, I don't want to be reminded of that when I look back over my blog. I want the illusion as much as anyone else does. It's like the person who dresses in a tracksuit 99% of the time but puts the photo of themselves in a dress on the mantelpiece. We all have a side we want to portray, and my 'ideal' is one where chronic illness, pain and fatigue do not dominate. My illnesses dictate every single thing about me, from what shampoo I can use on my scalp to which shoes I can wear on my feet. My fatigue level manifests in my squint eye, the amount of energy I have to turn my mouth up at the corners, how expressive I can be in my poses, and if even I remember to smile at all. You don't see the Jack Sparrow walk when the fatigue is bad, when I can't coordinate my limbs.

I try not to take photos on the days where I know I don't look like my best, as I'm a perfectionist and I'll only delete the blog post later on. I'll post a thousand selfies when I have my make up on, but it's a rare day when I'll show how I really look most of the time. It's not who I want to be.

You don't see the pain, the cramps, the agonising spasms in my back, the fluctuations in temperature as my muscles burn up after exercise and I shiver because my skin feels freezing in comparison. You don't hear my clicking joints from the post-exertion stiffness, the exclamations of pain when I've rested for a short time and my body has seized up. You don't see James helping me up out of chairs when I lack the strength to hold myself upright for those few seconds. You don't see the dizzy spells, or the nausea that has me throwing up when I try to clean my teeth.
You see the smiles in my photos, as I think I look better with a smile. Things are bad enough without being reminded how miserable I look. (Resting bitch face, lulz.) You don't see the tears, because some healthy people find weakness boring. I know this from prior experience. Healthy people only like to see 'inspiring' ill people, not the ones falling apart, and when you show the truth they unfollow in droves. (I bet this post will garner unfollows - c'est la vie!) I know I hate sharing the less pretty side of my life, let alone what it must be like for other people to read it. I counter any posts on my social media about my illness with happy, upbeat posts - even if they're contrived. It's a case of 'Yeah, things are shit but I'm really positive, honest!' I don't know who I'm trying to kid most, myself or everyone else. I can count the people who I let see me at my worst on my two hands.

You might see the occasional photos of my lunch out with friends, but you don't see the taxis I have to take there and back to avoid being in bed in pain all week afterwards. Just having lunch and walking around the shops taxes me for days afterwards. You don't see the rests I take in between the selfies and the photos of my lunch. You don't see me when I get home and fall into bed crying because I'm so fucking exhausted and frustrated at the limitations on me.

You don't see the pills I take, the 12 hours of bed rest a day I need to function. You don't see me writing my blog posts, feet up and covered head to toe with blankets on the sofa. You don't see the wild nights out because they don't happen. My last night out was 6 months ago. You see me trying to eat healthier and exercise more. You see the food I sometimes photograph but you don't see what I don't do to enable me to be able to cook. You don't see the expensive pre-sliced vegetables I buy as chopping veg makes my wrists feel sprained for days, and you don't see the housework which doesn't get done as it's a choice between me or the house on any given day, not both.

You see what I want you to see, and perhaps what you want to see. The pretty, the nice, the mask. I save the ugly shit for those close enough to me to want to deep sea dive into the truth. How much you read between the lines is up to you as much as it is down to my pretence.

This is the post which prompted the iceberg comment from me. I reposted it because the summing sentence made me giggle.


Why post this? Two reasons. Awareness, and something else. Are you being as kind to your chronically ill friends/family as you could be? Can your person truly let down the mask in front of you, without pity or judgement? Can you be there for them with emotional or mental support without really getting it (you really have to live it to do that) but trying to do so because your person deserves respect? The best thing you can say to someone with chronic illness is 'I believe you' and mean it.

The second reason is because my step dad does have cancer after all, seemingly the inoperable kind, and quite frankly thinking about anything other than that helps right now. My mum and step dad are being amazingly strong and upbeat and I'm really proud of both of them. This isn't about me, but cancer has blighted my family twice in 10 months. I wanted to do a post just about the news, but I couldn't find the words and I didn't want to take away from the dignity my mum and step dad are showing in the face of this. They're both prepared to fight. But I still wanted to address it in a small way, as I prefer to post daily when I can, and always feel the need to apologise for any absences. Not any more - if there's no post from me, then so be it. 

Give your loved ones a squidge next time when you see them, and take care of yourselves.
Leah xoxo

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