The Spoon Theory and Pacing

Spoons
Photo by Aphiwat Chuangchoem via Pexels

You may have heard people refer to themselves as “Spoonies”, or say they “have run out of spoons”.  So what does this mean?

“The Spoon Theory” was created by Christine Miserandino in 2003 in her essay of the same name.  Christine has lupus, which is an invisible illness that can cause a variety of debilitating symptoms.  Christine used spoons as a stand-in for units of energy.  They model how activities can be difficult and costly to people with chronic illness.  Each task cost a ‘spoon’, and someone with chronic illness starts with only a limited number per day.  There is no way to start with more, and trying to ‘buy’ extra ‘spoons’ can end up causing further problems.  This helped Christine’s friend to understand that people with chronic illness have to plan out their activities carefully.  Unexpected tasks might mean they cannot do other things due to having limited ‘spoons’.  The full essay is here.

The Spoon Theory can be a useful way of describing your experience to people around you.  It can also be helpful for self care.  Thinking about how many spoons you have each day (which may not be consistent), how many spoons will be needed for various tasks (which, again, may not be consistent) and planning out activities within those limits is known as “pacing”.

Pacing is a self-directed way of managing illness and fatigue that is personal to you.  It means getting to know your abilities and responses to certain stimuli.  This helps you to organise your time and activities.  It is all about balance – not cramming everything in first thing in the hope that you can rest later!

Perhaps one of the most tricky aspects to pacing is the self-discipline needed.  It is very easy to think, “I’ve only got this thing to do, I’ll just push through and rest later!” even if that will result in a much longer recovery time. You might also struggle with feelings of embarrassment if you need to stop an activity right in the middle, or fear letting people down.  I’ve written several times before about saying “no”.

Pacing isn’t an easy or quick thing to arrange, but it can be very helpful.  Long-term, pacing activities may be much better for your health than ‘soldiering on’.  Action for M.E. has produced a wonderful booklet that explains pacing, the evidence base for it and how to use it.  The booklet can be found online here.

Illnesses such as CFS/ME, fibromyalgia, EHS and lupus are very real, not just “in your head”.  This means counselling cannot ‘cure’ them.  However, these illnesses and their symptoms can cause, and also be made worse by, mental issues such as stress, anxiety and depression.  You may need to work through your grief or fear around your diagnosis, and get support in working out how to live your best life within these limits.  If you would like to make an appointment, please contact me.

Invisible disabilities

What are “invisible disabilities”?

Under the Equality Act 2010, a “disability” is any “physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities”.

An invisible disability means that this ‘impairment’ is not easily seen by the casual observer – the person who has the disability may indeed look ‘well’ even if they are not.

 

What are some examples?

Mental illnesses, chronic pain conditions, vertigo, hypermobility disorders and neurological issues including but not limited to CFS/ME and fibromyalgia are a few examples of invisible illnesses that can have symptoms which are disabling.  Any of these can make the person eligible for a Blue Badge or require the use of mobility aids, but unfortunately the ‘invisible’ nature of these conditions means that such people are inappropriately challenged when using them.  Assuming someone is “fine” because they do not have a visible impairment is an example of ableism.

 

What should I know about invisible disabilities, and how can I help my friend who is disabled in this way?

Some invisible disabilities, just like visible ones, can be ‘fluctuating conditions’.  This means that symptoms can be much worse or much better across a period of time – sometimes irregularly, sometimes in cycles and sometimes in response to external events (such as changes in the weather, activity levels and external stressors).  Your friend may not be able to make plans far in advance, or may have to cancel at the last minute.  They probably feel as bad about it as you do for running out of spoons!

Don’t forget your friend’s needs when planning events – do they have difficulty with stairs that might prevent them from joining you somewhere?  Are they unable to use public transport alone?  Are noisy or bright environments intolerable to them?

Whether you know them or not, it is inappropriate to question someone aggressively about the details of their disabilities or demand they explain why they might seem fine one day and very ill not long afterwards.  Phrases such as, “What is wrong with you?” should be avoided!  However, disabilities can be very isolating – so your friend may want to reach out and talk to you about it.  It is best to let them do so at their own pace and reveal only what they are ready to.

Your friend may also feel a range of emotions in connection with their disability – guilt about not being able to socialise as much, fear for the future, anger over being ill at all.  Conversely, achieving something (even a small thing) can be a joyful event and they may wish to share this with you as well.

Disability affects everyone differently – the person best placed to tell you about their disability is the person in question, if they want to.  Comparisons with others aren’t necessarily helpful, as everyone’s body and circumstances are different.

 

So where can you learn more?

Here are a few websites with useful information:

Invisible Disabilities List and Information from Disabled World

People with invisible disabilities fight for understanding article from NPR

How do you define invisible disability? by The Invisible Disabilities Association