July is Disability Pride month and I’ve been thinking about what I could blog about that might prove interesting or helpful to others. I am quite open about my experience of living with Myalgic Encephalomyelitis (ME) but realised I haven’t really talked much about it in relation to work. Then, remembering a report earlier this year highlighting that nearly half of UK employers now have someone with Long Covid (and likely to rise as more are diagnosed or contract Covid), I thought I’d broaden my post to look at things relating to Spoonies at work.

“What are spoonies?” I hear you ask. Well the terms spoonies comes from Spoon Theory, an explanation Christine Miserandino who suffers from Lupus came up with when trying to explain to a healthy friend, what it was like living with a condition where extreme fatigue was a major component.

You can read much more about it on her blog www.butyoudontlooksick.com (love that name!) but the basic principles are this: imagine you start each day with a random number of spoons. Each spoon represents energy and everything you do uses up spoons…and we do mean everything. Getting ready for work isn’t just one task, you have to break that down into getting out of bed, getting your medication, getting to the bathroom, washing etc etc. The idea is that very quickly you start to see you have to make tough choices on where you spend your spoons before you run out and how much rest and recovery time you need to build into your day. Plus you don’t know how many spoons you’ll have the next day, some spoons might carry over or you might wake up with even less than you did today.

People with all sorts of chronic health conditions including people like me, identify as Spoonies and talk about being high or low on spoons. It’s our own language and community and helps us feel less alone in our battles. Of course, many of us can’t work at all or are forced to work part-time, although changes to traditional ways of working since Covid are helping with working from home and flexible hours allowing spoonies to take more control on when they work and allows them to save those spoons previously spent on commuting and put them to more hours working (and earning!).

Now that we’ve got the basics covered, let’s look at some things you may want to know about working with a Spoonie. This isn’t particularly written for employers, they have plenty resources about working with disabled or long term ill staff, this is more about interacting with colleagues. And of course the big disclaimers are that not everyone is the same in terms of their specific health situation, the job they are doing or their personal preferences on how they would like things to be handled so do keep that in mind when reading through these suggestions:

1. Fatigue v Tiredness

Fatigue and tiredness are two very different things. Everyone gets tired but not everyone experiences fatigue. The key to understanding fatigue is that fatigue does not resolve with rest or sleep. It’s an extreme exhaustion, a “whole-body tiredness” and “daily lack of energy” . I myself regularly experience sleeping for long periods of time, as in having a full night’s sleep followed by sleeping most of the next day and then sleeping again that night, and will wake feeling just as fatigued as before. It’s not a refreshing sleep, it’s not relaxing, enjoyable or effective.
So if a spoonie talks to you about their sleep, pay attention and learn to differentiate between how much they have slept and the quality of that sleep to understand what they are really telling you. Have they had a restful sleep and are excited about feeling good or have they lost another day to exhaustion?

2. Triggers

It’s easy to assume that physical exercise is the only trigger for flares of fatigue and the amount of exertion needed to make someone feel fatigued would be similar to a healthy person. The truth is much more complicated. Firstly the amount of exertion or exposure to triggers can vary hugely between people and also can vary day to day. Last Saturday I cleaned and oiled my entire decking all by myself. This Saturday I needed to rest after walking downstairs and making myself a bowl of cereal! And it’s not just physical things, stress (mental or emotional) takes it’s toll on a person and can trigger a flare. Many others, including myself, can also experience sensory overload. Bright rooms, lots of movement, noise, proximity to others have all caused me occasional issues in the past. Where people are comfortable sharing, it’s good to get to know what their triggers are and how you can tell if they are experiencing a flare. My colleagues know for example that if I plug my ears and close my eyes, I’m not being rude about their presentation, I’ve been caught out by a sensory overload and need to be helped to a different environment.

3. Don’t make assumptions

Knowing one person who is a spoonie, doesn’t mean you’ll understand everything about all spoonies. And just because you’ve been tired/had insomnia a few times, doesn’t mean you know what they need or how they feel. Incorrect assumptions made about me include:

• that if I’ve slept I must feel better - wrong

• that if I’ve had a holiday I’ll feel better - wrong again - in fact sometimes prolonged changes to my routine like a holiday can make me feel worse

• that I’ll be entitled to a blue badge - I wish!

• that I will fall asleep easily - nope, I also have regular insomnia

• that I'll get better - who knows, not you for sure

• that on a good day I’ll be just like a healthy person - not at all, I’m still a spoonie on good days and am constantly weighing up how I spend my energy and the impact each decision may have on the rest of the day/week/month for me

4. And don’t make recommendations

Seriously, just don’t.

There’s nowhere near enough funding or research for many of the spoonie conditions like ME and many (again including ME) have historically been put down to “hysteria”…you know, code for “women’s issues”. 75-85% of ME sufferers are women so, yeah, it’s been ignored for a long time and with so much still unknown we don’t need to hear about your Aunt’s neighbour or that person on instagram or your old boss’s brother who tried whatever essential oil/diet change/exercise/sleeping position/random medication/meditation/prayer that made them better overnight. We’ve heard a million of these and we do not want to hear them again. We’re honestly tired enough.

5. Learn what flares look like

Many spoonies have conditions described as invisible illnesses which means you can’t always tell by looking at someone that they have a disability/chronic illness. My friends, family and some colleagues who have known me for a while can now tell just by looking or listening to me how I’m feeling but it might not be obvious to those who don’t know me so well. I am very comfortable talking about my health, others less so. So this one may well depend on the relationship you have with your spoonie colleague and how comfortable you are asking them about what to look out for and what action you should take, if any, if you spot a flare. My colleagues know for example if I’m standing and start stretching my legs and bending my knees, my pain has flared and I need a seat. If I go very quite, lose eye contact and don’t interact, I’m possibly fatigued (or even more frightening, lost in thought!)

6. Understand spoonie guilt/insecurities

Again, we aren’t all the same but something that seems to be a fairly common trait is a struggle with feeling guilty or insecure about not doing things/not doing enough/not attending events etc or even just asking for pretty reasonable or minimal accommodations. Logically we know, we are battling a bloody awful illness so of course we can't do everything and that is okay we need help but oooh those little voices inside our heads still pray on those insecurities, especially around those still displaying their long hours and unrealistic workloads as some sort of badge of honor (BTW didn't that nonsense get left behind in pre-covid times?). No, it’s often much easier to push ourselves too hard to save face or avoid an awkward conversation or to feel we aren't worth asking for help. So my advice here is to be aware of this, don’t push people, trust they know their limits, respect their decisions and their requests. After all, they know their body and their illness much better than you.

I hope this information is of help and to any spoonies reading, I’d love to hear any additional advice you’d give to colleagues and of course if you have any questions or want to know more about #spoonielife well there are plenty of us about, just ask or have a look at our chats online: #millionsmissing #pwME #spoonies #spoonielife #invisibleillness #chronicillnesswarrior tags should get you started and The Mighty is another great resource filled with content from those in the community.