Spoon Theory

This post follows on from my last entry on invisible conditions.

Yesterday after a full day of work and reheating dinner I collapsed in a heap in front of the TV. I was thinking (beating myself up) about all the things I still had to do and how normal people can just get stuff done in the evening. I felt bad that I wasn’t spending quality time with my child. I felt lazy. I had to remind myself:

“I’m not lazy, I’ve just run out of spoons.”

What is spoon theory?

Spoon theory was developed by Christine Miserandino. It is a visual metaphor (spoons) to explain the limited energy reserves of people with chronic illnesses. Every activity you do costs you spoons. This means that you would need to proactively manage the activities you do each day so as to not run out of spoons.

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How many spoons do I have?

When I first learned about spoon theory I got very excited, because it made a lot of sense to me. It explained why I would just collapse after certain activities, whereas other people could recover.

Spoon theory is a way to understand and explain your energy levels.

But I like to know the details. I tried to backwards calculate from the activities that I did each day how many spoons I had. That just doesn’t work.

Spoon Myth: The amount of spoons you have is static

Not everyone will have the same amount of spoons. Some may have 10, some may have 20. The amount of spoons that you have will likely vary each day.

This is because you are more than your chronic illness. There are other things that impact on your energy levels, for example, how you slept, if you have a cold/virus, extra stress, or are just generally having a difficult time (like being in the midst of a pandemic).

The same goes for how much energy something takes to do. The first thing I always notice about spoon charts (like the one above) is that a shower costs 1x spoon. This sits wrong with me, because I think showers are invigorating and give me energy.

The point is not to have a detailed log of spoons spent each day. Rather, the point is to use spoons as common language/metaphor that communicates the costs of completing activities for someone with a chronic illness.

Spoon theory can help us focus on our wellbeing

We can also use spoon theory to refocus the conversation. Instead of focusing on what I can’t do (my limitations), I can talk about what I can do – which is a strengths-based focus. When I talk about using spoons, it is a reminder that I am making smart choices for my own wellbeing and living in a way that is sustainable.

“I don’t have the spoons to . . .
Let’s reschedule for another day.”

Similarly, we can use it as a tool to demonstrate our understanding that other people may have limited resources.

“If you have the spoons, you could…”
This acknowledges that whilst something may be a great idea, it may not be practical. It empowers the person to say no.

Spoon Myth: You can bank your spoons

If you don’t use up all your spoons today, it would make sense that you have extra spoons tomorrow. This would be true if the spoons were a literal, concrete item that we were given each day.

However, chronic conditions don’t play fair. You wake up feeling energised and hopeful for the day, but within an hour you’re back in bed. You eat right, you exercise right, you say no to extra commitments, and still you feel exhausted. Chronic conditions are complex. Be prepared to be flexible every day. Just because we did not use a lot of spoons doesn’t mean we are guaranteed extra spoons tomorrow.

Spoon theory does not explain everything.

As much as I want to give you an easy answer and tell you that everything will be great now that you know about spoon theory. It’s not. It won’t be. Like everything, there are strengths and weaknesses to the concept.

Spoon myth: Spoon theory explains everything

Chronic illness is complex, but people crave to simplify the complex. Which is understandable, but unfortunately not possible by definition. Spoon theory in essence is a very simple analogy. To call it a theory is probably going a bit far. It’s just an analogy of limited physical energy.

However, the great thing about spoon theory being so simple, is that we can adapt it. Ultimately, the goal of spoon theory is to facilitate compassion by highlighting that we are not being lazy or flaky, but rather we have to prioritise our energy expenditure in a way that’s sustainable and maintain our overall wellbeing in accordance with our invisible conditions.

You should pick and choose from any theory and adapt it to what works for you.

Some people have suggested that spoon theory has been appropriated by the wider disabled community. I think that this is actually essential in social sciences (and very different to cultural appropriation), because through building on theories we actually build a much richer understanding of people. Theories are here to serve us, to explain our experience, not the other way around.

How I used spoon theory in my life

This is embarrassing to write down on the internet, where it will be forever, – but trying to live by my blog name strength through vulnerability.

Since forever, I have lived my life in a pattern that look something like this:

Not until after my autism diagnosis in my 30s did I break this cycle. Learning about autism I realised that feeling overwhelmed by my commitments was probably related to autistic burn out. That neurotypicals find a lot of things easy that I did not, like meeting with a couple of friends (I usually need to have resting time before and after in order to cope).

Having my diagnosis was a life saver, because it gave me permission to stop trying to measure up to what everyone else was doing and find my own path. I analysed what my priorities in life were. I took the top 3 priorities and I dropped everything else. I didn’t like it. I resisted it at first. But I dropped everything.

For the first time in my life I quit the things I loved not because a crisis was forcing me to, but as a way to proactively take control of my own wellbeing.

In doing so, I created extra space for myself to breathe. To come to terms with my diagnosis and really realise what this meant for me. To teach myself how I needed to live my life differently in light of my autism diagnosis. I spend more time processing things, emotions, situations, so that they weren’t building up. I learned to look after myself emotionally, and not rely on others to calm me down.

The idea is that eventually I will begin to incorporate more activities back into my life – and I have. I am looking for long-term sustainable ways that I can live, rather than short term gains by living like a neurotypical.

Chronic invisible conditions

What are invisible conditions?

Chronic invisible conditions include illnesses, disabilities and neuro-divergences that impact on the functioning on a person, but usually the effects are not directly observable from the outside. It is estimated that around 1 in 5 people have some type of invisible condition. Example of invisible conditions include: 

  • Chronic fatigue 
  • Anxiety, depression, and other mental illnesses  
  • Autism, ADHD, and other neuro-divergences  
  • Lupus, fibromyalgia, and other conditions  
  • Multiple Sclerosis, Lyme disease, and other diseases  

Plus many others. 

The vexation of invisibility

How often have you heard this?

This might seem like a fairly innocuous thing to say, but it completely invalidates what it’s like to live with an invisible condition. It is highly dismissive of the pain I carry. Rather, you thinking that I look normal reflects that you only see what I am choosing what I share with you.

When I disclosed my autism diagnosis to a guy I was newly dating he responded: “You don’t look autistic. I’m not going to accept that you’re autistic. I’m going to pretend you’re normal.” My autism is part of my identity, so I felt like this was an outright rejection of who I am. Needless to say, we did not date for long.

Strangers also do the “but you look normal” thing. When they give us a death stare for using the accessible bathroom. When they question why we have a accessible parking permit. When they question the need for our accomodations at work or school.

Some people have opted for these types of stickers after being abused for using accessible parking spots.

“But you look normal” even complicates the diagnostic process. I was refused a referral to a psychologist for an autism assessment in my 20s, because I was able to make eye contact (That’s neurotypical speak for: “you’re too normal to be autistic”). Many invisible conditions do not have a specific test that can definitively prove that it exists, rather they rely on experience and knowledge of the diagnostician and/or ruling other things out.  It can be expensive, frustrating and dehumanising to go through these processes, especially when dealing with health care professionals and friends or family that do not believe you. And often, even after an official diagnosis, those arounds us often still reject our diagnosis, which makes it harder for us to accept it fully.

4 tips on how to support someone with an invisible condition

If someone has chosen to disclose their invisible condition here are four tips on how you can support them:

Believe us. We are not making this up. If we have disclosed our condition to you, don’t be dismissive. Show support and understanding, and if you’re not sure how to do that, maybe say: “How can I best support you. What do you need from me”. We might not need anything, we might just be showing that we trust you.

If we have asked you for something, we’ve probably already agonised over that decision and beaten ourselves up about letting someone else down. Please be patient. We are not lazy or trying or making excuses: our pain is real. When we ask for a favour, call in sick, cancel plans or are trying to get accomodations at work or school: We are trying to be advocates for our needs.

Stick around. A broken arm heals.  A cold usually resolves itself.  But chronic conditions stick around.  People with chronic invisible conditions do not get the relief of the condition resolving itself. This can be a significant strain on our support systems. It can even lead to our relationships dissolving, because for some people it’s too much to support someone with an invisible condition.

So stick around, because we need you. I would like to think that even with my invisible conditions, I still have plenty to give to you as well!

Empathise. Empathy is when you understand something from another person’s perspective. Not everyone experiences their invisible condition in the same way as others, especially not if it’s mixed up with more than one invisible condition.

Ask me about my experiences. Most of us are experts on our conditions, because not only do we actually live them, many of us get involved in advocacy, talk to others with the same condition as us, and do a lot of research on the topic. Be careful that you don’t unintentionally minimise our experience either.

Don’t offer solutions (unless asked). This one is very counter-intuitive. If you’re my friend, it’s likely because I consider you to be a good friend, you’ll likely have empathy and be generous. And good friends like to help each other by sharing tips. However – wait for me to ask you. Unless you happen to be an expert at something to do with my condition, it is seriously unlikely that I haven’t already tried it.

When my migraines became chronic I researched non-stop and saw a bunch of different specialists. I tried different medications, supplements, diets, exercises and holistic treatments. I tried CBT, talk-therapy and neuro-feedback. In hospital I tried infusions, morpheine and a week long lidocaine drip. I tried Botox and even had a neuro-stimulator implanted in my brain. I went to church and was prayed over in a more than a few healing sessions. Nothing worked. But – I was very well researched, both about potential migraine treatments and about how I experienced migraines, such as onset and triggers. And still people would come to me with absolutely ridiculous suggestions to cure my migraines, like:

  • Have another baby (suggested by a GP)
  • Get a hobby to distract yourself
  • Rub half a lemon on your head
  • Try doing a green juice cleanse

Tips on how to support someone who hasn’t disclosed their diagnosis with you.

If someone hasn’t disclosed their diagnosis with you, that may be for good reason. Some conditions carry huge amounts of stigma. Many people have experienced discrimination. It takes courage to share a diagnosis and doing so is a deeply personal choice. Honestly, some days I can’t face the “but you look normal” conversation.

Since so many people live with an invisible condition, the best thing may be to assume that everyone has one and treat everyone with kindness.

If you have an invisible condition I would love to hear your experiences as well. I’ve written from an autistic/migraineur perspective and your experiences may be different.

My next post will be on spoon theory and how those with invisible conditions can use that in their life. Subscribe to have the post delivered to your inbox!