What the spoonies in your life wish they could tell you

Is a click on the heart emoji so difficult?
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Image: Juliet Brando

A couple of months ago I went through a period where I got really ill, really randomly – one of those flare-ups when your condition decides to hit you extra hard, not only with all the usual symptoms, but with bonus exciting new ones.

After weeks of feeling increasingly ill and worried, I decided to share my plight on Facebook. I wrote out my heartfelt update, explaining what I was going through. My finger was on the ‘post’ button.

And then I stopped and pressed ‘delete’ instead, because I realised there was no point.

I knew from posting previous illness-related status updates that no one ever responds to them – except for the usual fellow spoonies.

I reached out to a few of my chronically ill friends and voiced this realisation, and sure enough, that sense of not being heard by the well world was echoed back to me. Like me, many of my friends had stopped even trying to communicate about their illnesses with their friends, family members or colleagues. Memes urge those who are going through a tough time to ‘reach out’ – but it’s very hard to keep doing that and keep getting silence as your only response.

Many chronically ill people are also too scared to talk directly to non-spoonies about their conditions and needs for fear that they will be seen as ‘negative people’ and avoided. Many of us are very isolated and afraid to lose the people we do have in our lives – so particularly if what we want to say is challenging, we are unlikely to risk saying it.

We collected together some of the things spoonies most wish they could say to their family, friends and colleagues. At least some of these will probably apply to you.

‘It hurts that you think I would use my health as an excuse’

My ability to do things changes on a day by day, hour by hour, minute by minute basis – I have to constantly monitor my energy status. When I say I can’t, it’s because I genuinely can’t, not because I don’t want to – it hurts that you think I would use my health as an excuse to get out of doing things.

Tess, 32, female, ME, BPD, RLS, PLMD.

‘Please acknowledge my disability’

Please acknowledge my illness/disability. Stop brushing it under the carpet. I know you don’t know how to approach it, I know it’s difficult and I know you’d rather not have to bother with it, but I NEED YOU to find the strength/courage to at least have that ‘deep’ conversation with me.

Tom, 43, genderqueer, Beta Thalassaemia Major.

‘Fine is not fine’

Fine is not fine. When someone asks how I am and I say fine, chances are things are really not fine. If I’m good I’ll say good. If I’m okay I’ll say OK. If I say fine I am NOT fine.

Cheryl, anxiety/depression

‘I’ve had to distance myself from you’

People I used to consider close friends but who refused to acknowledge what I was going through as I became increasingly ill, I had to distance myself from. I’d really like to ask [them]: Why don’t you care? Do you think that acknowledging it might make you ‘catch’ it? Why do I see you supporting other marginalised groups, but you never ‘like’ – never mind comment on – my posts where I talk about my conditions, or check in with me? It REALLY hurts and it’s not OK.

L, 42, genderqueer femme, EDS/hypermobility, PCOS, PMDD.

‘Please take no for an answer’

It’s not a personal rejection of you that recharging time means alone time for me. No matter how low key you try to be, all people in general zap energy from me. So time chilling out and watching Netflix is not gonna cut it. Please take no for an answer.

@PrincessLegolas, Instagram

‘No, I will not “get better soon”‘

Just because I look healthy doesn’t mean I am. No I will not ‘get better soon’. No I will not ‘get through it’ and live my ‘best life’. Triggers are real-life nightmares for me. I smile and pretend to be ‘fine’ and ‘OK’, to protect myself from your harmful ableism.

You see anger in my face? That’s because I’m fighting my suicidal thoughts. You find me unapproachable? That’s because I’m sitting with my pain and that’s enough company for me right now.

IG @crunchy.biscuits, 52, agender, main conditions cPTSD, BPD, IBS.

‘Your disbelief makes it harder to fight for treatment and benefits’

It hurts that the people in my life who are supposed to be on my side don’t seem to believe my illness is real. I struggle with the feeling that if my own family/best friends don’t think I deserve help, then maybe I don’t deserve it from anywhere? My main health condition is physical, but feeling so alone with it for years has had a big impact on my mental health and made it harder for me to fight for support like treatment and benefits.

Max, 34, ME/CFS.

‘Please don’t jolly me along when you hear me groan with pain’

When you see me struggle to stand up from a chair, or hear me groan with pain, please don’t jolly me along and say “you should see me in the mornings!” I know that as we age our bodies seize up and lots of people slow down, but to me, your joking comments diminish my struggle, you unwittingly demean me and the pain I have to endure every day. 

D, woman, 57, Transverse Myelitis.

‘Chronic illness is also a social justice issue’

To my friends/colleagues who say they are fighting for social justice, I want to ask why they don’t seem to think that chronic illness and disability are social justice issues. Why they seem to think that including me in events and listening to my accessibility feedback is an optional special favour to me, rather than an essential part of what they claim to be all about.

Aly, Spooniehacker founder

‘Part of me would love to go back to working 60 hour weeks’

I don’t rest in the evenings or take days off to be good at managing my ‘work/life balance’. I do it because if I don’t, I’ll end up seriously ill or even in hospital. Part of me would love to be able to go back to working 60hr weeks, even though I know it’s toxic to many of the academics who feel obliged to do it. It makes me frustrated and it just reminds me of the gulf between the able bodied/ healthy experience/s and the crip and spoonie experience/s.

K, 29, genderfluid, main conditions fibromyalgia, hypermobility, and polycystic kidney disease.

These stories from spoonies contain a plea for understanding, for a basic level of compassion, to be seen and heard, and to have our needs taken into account. We’re not even asking for active help most of the time, simply for acknowledgement and accommodation. A common theme is of having to downplay our struggles in order to be seen as the ‘good ill person’ – stoic, stiff upper-lipped, bravely fighting without complaint or being a burden. We clearly receive and internalise messages that our conditions are inconvenient, difficult, and not valid. These messages are received via minimisation (SO much minimisation), impatience, and outright ignoring or denial of our struggles.

If you have chronically ill people in your life, I’d urge you to try to respond next time you see one of them posting about it on social media – even if it’s just with a heart emoji. Just knowing that someone cares can make the difference between a terrible day and simply a difficult one.

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If you’re chronically ill/disabled and would like to add a message to this list, email luminheks@gmail.com.

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