What is a label for?

Why not categorise mental health difficulties, as we do for many illnesses, to help us find solutions, interventions and drugs that might alleviate distress?

I find it slightly odd that I am writing this as for most of my life I have found labels both validating and comforting. It was the world telling me what I felt was real and not my fault – I could look at my label and feel like it wasn’t “just me” and that there were others in the same boat too. And then I realised that I felt excluded from groups with people I related to and with whom I felt a great deal in common, but I didn’t have the “right” label to feel a part of that group. I realised that there were therapies that really felt like they would help me, but I couldn’t access them, with the labels I had been given. I realised people I knew struggling with the same things all had very different labels despite their experiences and the things they found helpful being so similar. So I’ve been thinking and exploring why some people find their diagnostic labels helpful and some find them harmful.

The arguments used against the current diagnostic categorisation are many but here are a few: 

Firstly, there are issues with clinical trials as well as the fact that not everyone responds to even the best, most well-tested drugs for the most well-defined, well-understood conditions. On top of this uncertainty, many drugs are hard to get on and hard to get off in my experience (see some interesting medicine withdrawal discussions here). But these issues aren’t confined to mental health. 

There are issues around current psychiatric diagnoses that include overlapping symptoms, the reliability of the diagnoses and the validity of them. There is much written on this subject, but these issues are not only true in mental health. There are many similarly descriptive names for physical conditions and syndromes we struggle to diagnose, understand or treat well.

The existence of external causes is sometimes used as an argument against diagnostic categorisation. In general these causes don’t always mean we shouldn’t label the personal problem as well. We can label a broken leg and describe a fracture. If it’s been caused by someone drink-driving, we acknowledge this as the cause and as a society can attend to that, but we still call it a “broken leg”. We do not feel defined by this broken leg – and other people can see past that label. And that, for me, is where the key is. 

The label of the “broken leg” is a Small Label. It hangs off your leg. Professionals can easily see you as a Person with a Small label hanging off you to help orient them to the ways in which they might be able to help.

As an example in mental health, “Depression” can be experienced as a Small Label. Someone who has a temporary, isolated incidence of persistent low mood. They’ve got in a rut, they’ve started to spiral somewhat and they need support (chemical, psychological or social) to reconnect with their lives and their healthier coping mechanisms. This label seems fairly helpful. It’s tells us a bit about their current state of mind and the kinds of questions maybe to ask them and the sorts of things that might help. We can see the Person – the label is attached to their brain, but it’s relatively small.  The “social factors” we take into account, describe the wider context of that Person and help us to see how someone’s illness or injury is affected by other things going on in their lives or the sort of support they might have available.

It’s my opinion that people who are seen as People-with-Small-Labels, generally find labels helpful, because the label is providing information about what help they need and the label is enough to help them acquire that. 

Because the brain and the mind are the most complex and least understood of all the organs/processes of the body, and indeed one of the most complex systems in the known universe, constantly interacting with other incredibly complex minds to form an enormous network of incredible complexity,  I think some special rules must apply to this organ.  And because the brain is where meaning, identity and personality is made, a label that may be harmlessly applied to a pancreas or leg, has the potential to cause much more damage when applied here.

This won’t always be the case. And conversely, I’m also aware that for many people a chronic physical health label may also interfere with their sense of identity. In fact, I have noticed that my own experience of physical health services lately has involved a much deeper questioning of whether a label would be helpful or hindering to me as a person than I would have expected. So maybe this isn’t a discussion only relating to mental health. But let’s get back to mental health for a bit as I feel I have been immersed in that discussion a lot more than in physical health so will leave that to someone else.

Labels on brains can potentially interfere in meaning and identity-forming and in mental health services, there are a large number of people for whom these are the exact areas they struggle with and where they have deep vulnerabilities. This necessarily increases the chances of the label becoming a large part their identity and potentially being experienced as harmful long-term.  Not for all people, but for a significant number of people, such labels are experienced as Very Big Labels. And these begin to explain everything about a Person as they shrink behind it, becoming a Label that comes with a person. Everything about them is seen through the lens of the label (if you will forgive my mixed metaphors).

Many of these people therefore experience depression as a Very Big Label, particularly if complex, long term, recurring or not responsive to current treatment options and especially where there is a history of trauma or societal marginalisation. We can experience labels as Very Big when we are trying to use them to categorise really complex, deeply embedded difficulties, that are intertwined with our identities and personalities and that have developed over (often) our formative years. These labels are often an attempt to describe the effects of a lifetime of trauma and injustice that are not adequately addressed in our society. And they very often do not do them justice.  When a person’s difficulties are due to chronic trauma and injustice, to put a label on the person and not on the widespread social injustice they face, focuses the problem on the person. Of course that isn’t the intention – most health professionals just want to help us with our pain and difficulties, but the act of naming and labelling us based on the effects of these injustices helps focus attention and reinforces (unintentionally) that “this is where the problem that needs fixing is”.  It may not exclude attending to societal problems as such, but it does take up a lot of bandwidth.

This is not the same thing as taking “social factors” into account when we are looking at a Person-with-a-Small-Label. This is when our there’s not much of our identity or experience that won’t be fit onto the label.  And this labelling is mirrored in our language around “vulnerabilities”  and “protected characteristics” where instead of naming “racism”, “sexism”, “homophobia”, “economic inequality” as issues we take into account “ethnic background”, “gender” “sexual orientation” or “long-term unemployment”.  Instead of talking about rapists and abusers, we talk of “traumatised” or “battered” women and men. More labels for us as individuals and less labels for society to deal with.

Trying to boil down widespread and embedded difficulties with labels, makes it inherently harder to see the person as so much of their whole being is described on the label.  Of course, many professionals are skilled in working around this, but the Very Big Label can make it harder – not just for professionals, but even for ourselves and our social networks. It’s inherently easier to stereotype people with Very Big Labels that have been written based on their ingrained behaviours and personalities than labels based on a broken leg or a dysfunctional pancreas. Anyone with a leg can have a broken one and it doesn’t really trigger any unconscious bias, stereotype or prejudice in and of itself. The names of some labels also leave a lot to be desired and I am not sure how it was overlooked that labelling someone with a “personality disorder” might cause more stigma than their difficulties themselves do. It would seem to me this makes life even harder for ourselves and any anti-stigma work that is needed. When even naming of genes such as “sonic hedgehog” have been under fire in case they cause distress whilst explaining a genetic abnormality to a patient, how did it ever seem okay to tell someone they have a “personality disorder”?

I totally understand the need that professionals feel to classify in order to ease the process of finding ways to help us more effectively. And I totally understand that many people feel empowered and validated and helped by whatever label they have. However, what I’d like to get across is that for many people this is not the case and whatever your intentions are, however useful you may judge the words you write on the label to be, the effects may feel very different to the person being labelled. And that matters.

It matters to the person:

accessing effective support:
Professionals in mental health research and practice are highly intelligent, innovative, curious people, with great dedication. They typically have a great deal of expertise and resource, so I am utterly confident that if they applied these skills to finding new ways of combining all the complexity that is biology, psychology, and sociology that we might find ways to help these people for whom the act of diagnosis and labelling has been difficult, unhelpful and traumatising. Can we keep building more of an evidence base and flexible pathways for support that do not rely solely on diagnostic labels?

anti-stigma campaigns:
I feel we could focus more effort on ensuring society treats emotional distress with the same seriousness and responsiveness it does physical distress, regardless of the labels we use, or whether someone has chosen not to accept a formal diagnosis. Most anti-stigma campaigns are heavily reliant on diagnostic labels and I would like to see more discussion of severe difficulties experienced by people without necessarily relying on the diagnostic framework at all times.

welfare:
Many of our most traumatised survivors are forced not only to bend but split their identities around a confused and non joined-up welfare state. They must be labelled, even if they find it harmful or unhelpful to have a label to get vital and life-saving financial support.  But they must shake the label to grow and develop and “get better” in therapy. The current welfare state forces the people for whom growing up involved breaking themselves into different pieces acceptable to different people to keep doing the same, whilst at the same time asking them to recover, become whole, find meaning and become economically productive.

and it matters to the science of mental health itself:

Professionals and researchers may feel this makes life more difficult, but dissecting and addressing difficulties is a part of finding the best solutions. What’s the point of a system that is easier for professionals but causes harm to some patients? Usually the patients who have endured the most trauma and injustice. It is important to recognise that the act of diagnosis itself has an effect, and for a significant number of traumatised people, this can be a very negative effect. When we study a star system, the words we use have little effect on that which which we study. The stars don’t behave differently depending on how we describe them. When we study human beings, the words we use impact the subject.  What may seem like “just words to describe a cluster of problems” can become an inextricable part of the problem we are trying to objectively observe, study or address. When we start to change the nature of the problem through attempts to classify, we hit a scientific problem

Neurobiology & interdisciplinary research:

We are not closed biological systems and the most harmful and the most healing effects on our brain chemistry are other humans and they way they behave. There’s a lot of complexity around the causes of mental health problems that reaches far beyond the individual body/brain/mind and even social network, that is not often factored into the kinds of research we do or even the definitions of the problems we are trying to solve when we look at mental health research.   Given that the biology of our brains and the functioning of our minds, more so than the rest of us, is intimately interconnected with other brains (even when we are connecting with people thousands of miles away via technology) and given how much more complex our minds are than anything else we know of, a lot more focus on interdisciplinary research that can deal with complex systems with emergent properties, including mathematical modelling, might be extremely helpful. We can’t keep treating the brain as an organ like any other, when it isn’t even in the same planetary system (never mind ball park) in terms of complexity as any other organ.

Maybe if all this complexity could be addressed more consistently, then some of us can start to give back to society some of it’s Very Big Labels. There is strength in numbers and a whole society can bear the burden of these problems better than struggling individuals.

Advertisements

Resilience

It’s not us, it’s you

You’re weak and slightly wrong

You need more ‘resilience’

or you’re going to break the bank

You see, your flesh and blood are problems

You bleed when you are cut

Your brittle bones keep breaking

Everytime you’re hit by a truck

And look, when we push you,

You always seem to fall

It’s okay, though we can help you

To live in our world

 

We can take all your bones out,

Fill you full of gold,

Replace your nerves with steel wires,

To build a cage for your soul

We can wait for a while but try not to take too long

Come back when you are ready

to live in our world.

Silence – really rather lovely!

I attended my first full day silent retreat this month with my fabulous, warm and compassionate Mindful Self Compassion teacher, Annette Boden.  I had previously attended a half-day retreat as part of the Mindful Self Compassion Programme (created by Kirsten Neff), and taught by Annette in a beautiful spot in Disley – a really magical place to learn, well, anything really – but especially self compassion!

DSCF4960

I have a strange relationship with silence. I love it, but for some reason there are times I feel like a demon possessed with the desire to fill it with noise, even if I have nothing sensible, interesting or amusingly silly to say (usually at home with my sisters)! I live alone (and don’t often leave the house), so I spend most of the time silent, most days. And yet the first time I tried it at a retreat, it was really really hard! Why?

  1. I think there’s a difference between being silent on your own and being silent where there are other people.
  2. There’s also a difference between being silent, but keeping your brain occupied with reading, writing, TV, radio etc and being silent and just being there.

It started off feeling like a lot of effort to stop talking, but I was grateful that we had some time before the official start for a little catch up chat with the other members of the group.  After that, it was like an itch I couldn’t scratch. My brain forgot its itch after lots of soothing breathing, sitting comfortably with blankets and listening to Annette lead us through some lovely meditations.  I sort of settled into a warm, calm space, where there were words from Annette, words in my head, birds tweeting and creaks, shuffles and gentle breathing (and the occasional gentle snore from a couple of people too!).

Silence means we can’t make our thoughts solid by voicing them. There are things I never voice but I can write.  It feels to me, that saying something out loud can turn nothing into something real. Equally there are things I can’t write, but I can say out loud, and this process too, does something to the ideas to make them more real to me. What I have found is that since my day of silence, I have been more in control of my voice. I have had things to say that normally there would be insurmountable barriers for me to actually, you know, say.

In silence we are forced to let thoughts go or try to cling to those vanishing little puffs of meaning. I think for longer retreats I’d definitely take a notebook, but for this one it felt good to practice letting go of a thought without backing up to paper. I have such a habit of trying to capture all my thoughts in case there’s something useful there that I think this was actually a lovely feeling, difficult though it was. My brain, after some arguments decided it was quite nice to just sit in a bath of warm brain chemicals doing their thing, without any need to do anything with any of it. And I think that’s kind of how it felt – like a hot relaxing bath for my brain! I gave it the day off (well bits of it, I needed a lot of it to stay alive and stuff but you know which bits I mean!).

And in this calm, my brain didn’t feel so terrified (or too low on computing space) to form words and thoughts it might have normally struggled with. Perhaps because I wasn’t going to do anything with them anyway.  It gave me time to appreciate other things, people’s smiles, the sound of my breathing, the ways we connect with each other without a single word, and a lovely poem we had read out to us that I have previously written a post inspired by here.

DSCF4978

There are obviously still barriers, but I have found my day of silence refreshing and empowering. It’s not at all like those “confidence building” tricks, it’s so much more quiet and subtle than that – it’s a shift that just made making words a little bit easier. Perhaps because my brain stopped feeling so much pressure to perform? I don’t know. Whatever it is, I like it. In fact I like it so much I’m doing a week soon with BreathWorks. I may not like it any more when I get back from a whole week, but I suspect I will.

I can highly recommend learning Mindful Self Compassion with Annette, and her guided retreats. We had some wonderful guided meditations, the smell of the most gorgeous lavender oil, the calm warm guidance of Annette, blankets, warm socks, a little sunshine, tasty treats and the most beautiful Peak District setting for a whole day of silence.  I felt like I’d had a week’s holiday when I got back!

My first low fodmap savoury muffins

Yes – I mainly make muffins when I have managed to spare enough energy to cook something for the days ahead. They really are amazing – I can minimise energy use about thinking what to eat, use of cutlery/crockery and washing up once I have a bunch of these in the freezer.

Cooking tip for fatigue/pain: I buy a lot of canned, UHT (like orange juice lunchbox cartons from concentrate) or frozen goods (including chopped herbs and sliced veg). I also buy pre-prepared food and store things like massive bags of grated cheese, bags of cooked quinoa and left over tinned stuff in the freezer. That way your ingredients last until you have the spoons to use them.

 

Mediterranean muffins!

In a measuring jug:

2 handfuls frozen chopped chives

2 handfuls frozen chopped chillies

2 handfuls frozen chopped basil

salt and pepper – to taste

a few tablespoons of lemon juice (I use a bottled version)

80ml olive oil

And a good glug or two of garlic infused oil. No actual garlic to stay low fodmap.

Add water to about 300ml

2 medium eggs

mix with a fork till mixed!

 

In a mixing bowl:

275g flour gluten free plus 2 tsp xanthan gum OR normal flour

2tsp baking powder

40g dried sundried tomatoes (soaked in warm water for 20 mins)

half tin of black olives (freeze the rest) – about 75-100g

couple of tsp smoked paprika

a couple of handfuls of grated cheese (you could also use feta)

 

Add measuring jug liquid to bowl and mix – but not too much – just till you can’t see any flour

Add some cooked quinoa (a couple of handfuls) if you have some (defrost first if you keep it frozen too!)

Put in 12 cases in a muffin tin at 180 degrees for 20-30 minuted – till golden brown.

 

This time, I took pictures:

DSCF5031DSCF5033

 

 

 

 

 

 

 

Newspaper yarn Gallery

You can buy my newspaper yarn creations on my Folksy shop here.  

Cooking with fatigue/pain

One of the things filling out the dreaded PIP form has helped me to realise is that I don’t have usuallu enough energy to feed myself.

On a really good day, I love cooking. Most days are bad days energy-wise and some days I use that energy to LEAVE THE FLAT or shower or write a blog post or some other wildly extravagant pastime. Inevitably this leaves me eating coco pops, rice cakes, satsumas and bananas all day most days.

On some days I can do some Making of Actual FoodStuffs, but I also am on a fairly restrictive FodMap diet for IBS symptoms. The diet has been really helpful – but impossible when you consider the fact I don’t like eating animals and I struggle with preparing meals and that high fodmap foods include onion, garlic, chickpeas, wheat and many other random foods! This makes even using ready meals or takeaways to feed yourself tricksy! NB: A low FodMap diet should be done with a dietician according to the NHS, so this is about sharing ideas rather than recommending you eat the things I do, or that you should also do this diet – *I am not a medical doctory person/dietician*

I’ve been trying out various recipes and I would like a place to keep them, so I can access on my surgically-attached smart phone, and I thought others might find it helpful for self care when energy/ability is low so here they come!  Some are a bit more demanding than others but laziness  I mean, chronic illness and fatigue, are the mothers of invention.

I shall start you off with my favourite thing:

MUFFINS. Because when you can’t summon up the energy to hold a plate, do chopping, clean a plate, think about plates or cutlery and you haven’t slept and you are hungry:  having these in the freezer or in a tin is very very handy indeed. They come with a muffin case and you can just shove them in your mouth.

I use cups because….well….so much easier!

Maple, pecan, banana breakfast muffins (NOM!)

Oven: 180 degrees, preheated

12 Muffin cases in a muffin tin – fill them with mix and bake for about 20 mins. Use a timer in case you doze off whilst resting after this activity!

 

1 3/4 cups self raising gluten-free flour

1 tsp xanathan gum (worth having if you can’t have gluten)

OR NOT LOW FODMAP OPTION:  use normal flour (no need for xanthan gum if you have gluten)

1/3 cup of sugar – you can add more, but I am trying to do self care with these

1 tbps baking powder

a pinch of salt

1/2 tsp allspice, or cinnamon or something nice

 

GET ALL OF THIS OUT ON WORKTOP plus spoons for mixing and cups for measuring.

SIT DOWN AND PUT ALL OF THIS (in bold, above) IN ONE BOWL AND MIX

Maybe have a little rest or do some mindful breathing and chill

 

Now get another bowl and the following:

about 4-6 tbsp maple syrup depending how much you want it to be sticky and/or sweet

 

1/2 cup oil (of some description – I used olive oil)

1 tsp vanilla extract

1 cup mashed up old bananas

EITHER 1/2 cup of soya milk/rice milk or real milk if you can do lactose

OR 3/4 cup of “milk” plus a large handful of cooked quinoa (I cook a whole box every now and then and freeze in bags for chucking into stuff to make it healthier and more filling)

PUT ALL OF THIS (not in bold) IN ANOTHER BOWL AND MIX

Ah go on, a couple of mindful deep breaths again…

 

Now pour the liquid bowl into the floury bowl – mix till you can’t see flour but not too much – it should be a bit lumpy

Add as many pecan nuts as you can handle/seems sensible and very gently mix in/fold in – I used about 50g and left them whole (I don’t use spoons for chopping!)

 

Spoon into muffin cases and bake at 180 degrees for about 20 mins and put your feet up.

Try not to forget them.

ENJOY with some kind of hot beverage!

I make a big load and freeze them – they are lovely pinged in the microwave for a couple of mins or left to defrost. I’d include a photo, but I ate them all. I will make some more and update this when I do.

I hope they work for you.