The pitfalls of identification with a label and the power of positivity

I wrote, just yesterday, about the importance of using the most appropriate label for a condition and I really meant what I said about how it can make a big difference. Chronic Fatigue Syndrome (CFS) feels like an extremely tired (excuse the pun) label for what I prefer to now think of as Myalgic Encephalomyelitis (ME) because “tiredness” doesn’t even begin to cover what the condition entails so the use of the wrong label does it a disservice!

However, that said, and its an important point to make, too much identification with a label can bring its own sticking points and that’s what I want to talk about today, along with various ways of staying in a positive mindset, which is just so important for quality of life and better health, whatever your starting point but especially if you are dealing with a diagnosis.

I noticed two things happen as soon as I opened the ME “box”, switching my mindset to that name after years of considering myself to have CFS (to the point I had stopped giving much though the label at all, another pitfall because labels hold meaning and weight). The positive thing was that much more information opened up to me than I had managed to uncover for a long time and that was apparently because there seem to be two distinct streams of information about this condition, depending on which label is used for it, and not all of that information comes up in a Google search when you input one name alone (why there is not some consensus by now on which name to use really confounds me). Did you know, for instance, that there is an ME-pedia website which is an incredible one-stop resource for information about the condition (but no CFS-pedia…), which is something I had never come across it until yesterday!

The other thing that happened to me, remarkably quickly, was a sense of settling into the newer label and kicking my shoes off or, as it were (the closest I can describe) arriving “home” in it, because it feels like a better fit than what I had before. There was something almost comforting about it, to find I have this “thing” that I can better use to convey to others and to describe myself or source information that might be helpful to me. This highlights something fundamental about the human brain (and perhaps especially the autistic human brain…), being that we like to define things, put things into boxes, to contain the idea of them, to sense the very edges of things so that we know exactly what we are dealing with, including and perhaps especially ourselves!

However, in so doing, we sometimes limit our ideas…and ourselves…by preferring to feel safely contained than to face up the abstract and unknown, with all its inherent potential and possibilities.

As an autistic person, I am a visual thinker and draw comparisons between feeling and visuals as my way of relating experiences and the nearest thing I can come up with, to describe how I felt about applying this new label to myself, was that it was somewhat like how it used to be when, as a child, I would wrap myself up in a big thick duffle coat and pull the hood up over my head and slightly shielding my eyes. I would immediately feel better contained, buffered, protected from the world, as though I had landed in my portable safe place, from which I was better able to interface with the outside world with all its inherent challenges because I was safely tucked away behind layers and no one would see much of me, only my outer casing. Or, another analogy, how it would feel if someone donated to me an interesting box with a lid to play with and I would cart it off to my room and create something out of it. Before long, I would have created an entire universe of play out of this box, along some theme or other and, in my imagination, I was able to shrink myself to box size and live inside of it; again, feeling contained and safe within my own little imagery world.

Both of these analogies remind me just how beguiling the feeling of being contained can be, which puts me at risk of being over fond of wrapping labels around myself as both a conveniently relatable way of conveying who I am to others (something I have always struggled to do as I don’t feel all that relatable) and as a buffer. Perhaps we all have this weakness for labels but it also feels like an autistic trait to be this attracted to them.

The thing is, when we identify with a label and, as it were, shrink ourselves down to its size, we also limit our options, we cut off our potential, we preordain how things will turn out from now on and so what we gain in a feeling of containment and safety may also lose us the opportunity to ever break out of the label. This also risks dictating how others will deal with us from this point onwards (which is a whole other topic when it comes to discussing whether to get an “official” autism or ADHD diagnosis or telling anyone else about it). This is what all labels, but perhaps especially diagnostic ones, do to us.

Those memories I shared from childhood are good and contented ones and, in many ways, I can track the same habits in myself today since I still love to feel contained or to play with the idea of containment in my life and my art. However, when it comes to “climbing inside” a concept and making it your home, there are obvious pitfalls when that identification with a label equates to something problematic, highly challenging and limiting such as a health condition. Its one thing to feel safe and quite another to box yourself in out of fear and there can be a tendency to do this when you are autistic or have other challenges that make it hard to keep on getting outside of your comfort zone or trying to be any different. As someone who thrives on routine and familiarity, the risk of preferring to stay put, even in a state that is less than ideal, rather than daring to branch out into something new, perhaps even a state of recovery with all its inherent new challenges, can be a sticking point locked deep in the psyche.

Likewise, I have loved coming to realise that I am autistic, a label that has felt like the homecoming of all homecomings, as I have heard described by so many people that have come to realise rather late in life, because it has made so much sense of me, shedding so much light on who I am and where my strengths and weaknesses lie. One of the great positives has been coming to identify with other neurodiverse people and relating to their stories. However, if I focus too much on my own past stories of hardship to do with autism,, and then add into the mix all of theirs, it becomes all too easy to use autism as an excuse to feel hard done by or to not to try any longer, whereas, beforehand, I had striven to be all that I ever wanted to be without boxing off certain areas as “possible” or “not possible”. Yes, all that effort to fit in, to do what other people do, had throughly burned me out but there was now a new risk of declaring “well, I’m too different to fit in, I can’t cope with social situations and now I have the proof that says so”. In other words, if I wanted to, I could use autism as a ticket to declare I am just no good at face-to-face communication, that I don’t like changes to routine or to be over-stimulated and then use those excuses to stay at home, keeping to myself for the rest of my life. There has to be a balance between the idea of autism and my particular version of it, which will certainly not be as black and white as all that!

In other words, if I was to identify too closely with either the idea of my ME or my other chronic conditions, or my neurodivergence as an AuDHD woman, I might be at risk of assuming there are a whole lot of things I can’t do or should never even bother trying.

It can be a useful exercise to consider what is it that I am so worried about happening when I consider my options through the eyes of ME or autism. At the same time, if (with my other hand, as it were) I can also try to hold the idea of what I would really want out of life if all things were possible, with no limitations, then I can imagine bringing those two apparently disparate objectives together and seeing how they could possibly resolve themselves. This resolution happens, not through making a cognitive effort but by letting the intuitive mind work it out for you. You can do this through the process of noticing common ground between the two viewpoints (this comes easily to my autistic mind as I am good at noticing similarities and patterns). If its a typical case that my surface fears around my health or divergent limitations amount to an underlying fear of failure, of being belittled, rejected, hurt or having my freedoms threatened…all of which point towards the underlying desire to be accomplished, accepted, happy and free…then there is common ground between them, because both sides want the very same things and so I can let them start to work together. Paul McKenna talks you through this process in the book referred to below, if you want to work with it more.

If my core objectives are to feel safe, included, free, then I can still safeguard those priorities at the same time as pushing some of my so-called limitations to see if there is any more give because I have now identified that my overall objective is to feel good about things too and, if I don’t feel good, I won’t generally put myself in a situtaion any more (gone are the days of trying to force myself to fit in). It helps to remind myself that I am not about to sell myself down the river again; now that I know about my autism, my sensitivity, how fatigued and overstimulated I can get, I am always going to put my own needs first and not force myself to do anything that feels outside my comfortable scope. In fact, now I understand my inherent needs far better than ever before, I am going to take better care of myself than ever and can therefore relax more, knowing that I will do what’s best for me at every turn and self-advocate if necessary. This should, in effect, lead to myself feeling less anxious about saying “yes” to a few things instead of always saying “no”. In other words I don’t have to live a stereotypical chronically ill life, or even a typical autistic life (if that isn’t an oxymoron…) if I don’t chose to.

Many times in the last few years, but never more so since realising about my autism, it has come to my attention that, in succumbing to a chronic health diagnosis, there could be said to be an underlying agenda of protecting myself from harm and also freeing myself from the old way of life that never (ever) suited me as an autistic person. Long before I realised my autism, I found the neurotypical way of life utterly abhorrent and knew it would never make me happy to go out to work every day or structure and prioritise my life, my material aspirations and social behaviours in the ways that are considered to be “normal”. So, you could say that by making me unable to continue living that life, my chronic health has “saved” me from having to continue pretending that life was for me!

This isn’t to say that my health condition isn’t real (it is very harshly real most of the time) but that there may be an underlying fear of giving it up, as in, of recovering and then having to “return to normal”. My version of a normal life, of the last 18 years, has allowed me to stay at home every day and I am extremely happy about this, whatever the reason for it, and nor would I ever want it to change. This kind of thing, combined with a strong identification with the label of it, can make recovery from a condition or even an improvement from it a very hard thing to achieve because of the mixed agenda. While there is any vested interest in an identification with the diagnosis (like slipping into a thick duffle coat and pulling the hood over your eyes, to use my own analogy), there may be a resistance to any form of change, even the positive variety. The same can apply to any label, autism or ADHD for example, because if you focus on “what you can’t supposedly do” according to these labels (especially if your aren’t fond of doing those other things, in which you may have had a poor level of success before, for instance making friends or committing to something), you will never bother to try again, which is what makes a deficits based approach to neurodiversity such a harmful approach (and one that I avoid).

Instead, I like to surround myself with positive people who take their lives day-by-day, always prepared to question what they are capable of and to focus on the gifts of every situation, even when they are dealing with some supposedly hardwired traits that make things extra challenging or with symptoms that put them at a disadvantage. In every situation, there is some sort of positive to be gleaned, even if it is simply the deeper understanding that this thing you were considering isn’t for you (so what is it that you prefer to do then, as every negative silently alludes to a positive). Or perhaps I can manage more than I might have thought I could before I tried. Whenever I’ve turned my own perspective around like this, I have always managed to be surprised by the results. Extreme identification with a label, and all the fixed ideas that tend to get attached to those labels (such as “you can never recover from ME”) can really get in the way of that!

Feeling conflicted about an outcome can really interfere with its likelihood. If part of you wants to recover but another big part of you fears change or wants to protect you from overdoing it or repeating what happened in the past, it’s unlikely you will make much headway. If you want to make new connections and friends, to feel more included, yet part of you dreads rejection or belittlement, again its unlikely you will get very far as you will self-sabotage before you have even begun; perhaps using a a fixed idea such as “I’m autistic, I’m no good at social engagement” as an easy excuse, as I mentioned before. At the surface, you tell yourself you have no choice but beneath that surface, things are seldom so cut and dried. Its important to locate any subplots of agenda keeping you from what you want.

It’s that same old lack of confidence that may have blighted you all your life, as it can so easily do when you feel wrong-footed amongst other people who seem to have completely different skill sets and perspectives, in fact almost a different way of signalling to each other as if by some secret code you never learned, leaving you feeling out in the cold and disadvantaged. This is a very common experience for undiagnosed autistic people because they often can’t figure out why they are coming across as so very different or why they are not so readily accepted or understood by other people. They see the end results but the understanding of why can be missing and lead to terrible self-doubt. However, up until now, this was because they really were in the dark but, now that they have their diagnosis, the lights have been switched on and everything changes (one of the plus points of getting that label “autistic” and finding out what its traits are).

So, you may think that finally coming to know you are autistic would only make these kinds of situation worse, as in more inevitable, but really the opposite should be true. Rather, since discovering I’m autistic, I feel much more confident in myself because I can notice the patterns of my whole life to date, seeing them now floodlit by the once missing factor of autism, meaning I am now able to make far better sense of them than ever before. I have therefore come to better understand my weak spots and all the ways that I come across to others that make me stand out or seem different and so I am able to play to my strengths (having noticed many of them too) and pull back from my weaknesses, choosing where to put more emphasis, instead of bumbling along unwittingly, hoping for the best. There are certain things I don’t even expect of myself anymore now that I know I have always had these weaknesses (such as making lots of smalltalk), however I also know not to put myself in those situations if I can possibly navigate around them and, meanwhile, I can target the kind of engagements that I’m better at and where my straightforward and open approach might be more welcome. In other words, I can tailor my life far better now that I am in the know, which actually means I can afford to be less avoidant overall.

It’s harder to overcome lack of confidence from years, perhaps decades, of chronic health issues, especially if you have become quite withdrawn from life and so-called normal activities as a result. Added to all the social challenges is, likely, a fear of running out of stamina to see an activity through to the end, also a fear of letting others down and of biting off more than you can chew, or setting yourself back with a major flare-up of symptoms from overdoing it. These fears can be hugely obstructive to doing what your heart wants to do because you have track record of them playing out badly before, and this can feel like an impassable hurdle.

However, it can still be useful to identify what it is that you really want for yourself in life, what makes you truly happy, how your best life would be lived if there were no obstructions and then you can start to identify the core values that underly those things. If, for instance, you dream of being able to live in rural location, having an influx of money, being valued, having more fitness and mobility than you currently have then you might be able to identify that what is really important to you is peace and quiet, the ability to be generous or take up more hobbies and interests, to enjoy some companionship or to be unfettered enough (by money, as you see it) to experience more things than just the four walls of your house. Perhaps then you can work on bringing some of those factors into your life as it stands…such as arranging a couple of short breaks away or going to a concert, starting a new interest, finding some doable ways of connecting with one or two other people and doing something you haven’t done before or for a long time (or at least planning to do it by taking the very first steps). By introducing versions of what you really want, you can start to open up your experience, even if the first step is an online friendship or a virtual concert, because it’s the making of the new experience, itself, that starts to break down the feeling of limitation, no matter on what scale.

Because (as I wrote about recently in my post Living (Not Waiting) self-empowerment comes from feeling like we hold sway over at least some things in our life (a feeling that long term health issues can often steal away from us…) and there is usually something we can shift or encourage along in a new direction if we are open to the possibly, even if it feels quite minor to start with. Labels, by contrast, can sometimes suggest to us that we have no possibilities outside of that label and are thoroughly stuck in the mud!

It’s so important to have good things to move towards. Health limitations can seem to remove everything bright and shiny off the horizon but that shouldn’t be so and we can always make sure it isn’t the case by focussing on what we enjoy or, if we can’t remember what that is, what we used to enjoy as a starting point. Visualisation and other methods of stoking up old passions (photos, music and other sensory reminders) can be a big help. From some of my bleakest places, I have managed to rally a different kind of attitude and the belief that I’m far from “done for” yet and all because I decided I had had enough with the doldrums and needed to bounce back somehow. It’s amazing how quickly such a change of attitude can turn things about, and in some pretty surprising ways. Conversely, surrounding yourself with a cohort of others that prefer to see the negative sides of a diagnosis or who live in their past stories of how difficult things have always been for them will only ensure you stay exactly where they are, stuck.

The mentality that we “need to be fixed” is a tricky one that potentially keeps us locked into victimhood. Of course, when you have a chronic condition, you inevitably spend a lot of time looking for answers and solutions, not least because of a lack of the kind of medical expertise and level of care that other conditions seem to come with. As for autism, there is a significant need for a thorough overhaul of attitudes and support systems related to this (especially for female adult autism, which is grossly undercatered for) and the idea of needing to “fix” neurodovergence is so horribly outdated and misguided, yet the current shortcomings of support do not negate the fact that answers and support are still needed by those still coming to terms with their neurodiversity and the impact on their lives. This inevitably means there are whole swathes of us using the label of our diagnosis to try and box-up what it all means to be autistic and how we can then get on with the rest of our lives and we do this, largely, by hyperfocussing on other autistic stories of challenge and struggle because this is how we get to identify what we are also dealing with, which until now has been largely cloaked in mystery through lack of information. The recent boom in anecdotal information about late diagnosed adult autism and ADHD is a sizeable testament to the massive hunger and desperate thirst for information coming from those it relates to.

However, looking for external solutions, including to psychological stuckness, keeps us imprisoned in a system that thinks there is (or ought to be) a prescription for everything. Really, a big part of it is an inside job plus a case of mingling with others who project positive attitudes or have a more proactive approach. Nothing is inherently “bad” except how we react to it, which is a personal choice. Since we often take our cues as to how to react from others, it’s far better to take those cues from people that are positive and who don’t sit around feeling done-for at the first hurdle. When we are really struggling, and we all feel like this at some point, finding people who inspire us can help, as can really familiarising with what they do and say, enabling us to slip ourselves into their mindset and bring some of those positive attitudes back into our own psyche to buck ourselves up. There are also some tools we can use, such as Paul McKenna’s book “Positivity: Confidence, Resilience, Motivation” (2022), that can really help to launch our own mindset of positive attitude in some extremely practical ways (and not just as an academic concept). I, for one, find his extremely direct, scientific approach extremely user friendly and appealing compared to a load of materials I used to try urging me to say positive affirmations and such (which never worked out as my logical autistic brain wouldn’t accept what wasn’t already real). He also makes use of Havening which I have talked about so enthusiastically before as a powerful tool for transforming, or breaking out of, a strong feeling.

In fact, nobody knows as well as an autistic female that has had to mask all their lives, just to survive, how effective it can be to mimic the behaviours of others until we are have nigh-on convinced ourselves that this is how we are too. This ability we have learned on the hoof and leaned into for years, perhaps for decades, as a social survival tactic, can now be used as our strength. Not because we want to take up masking all over again but as a way of planting the seed of a better, healthier, more confident feeling inside ourselves in order to let it to grow to fruition as our own better-feeling state. Collecting resources from favourite authors or relaxed and positive people (including, or perhaps especially, neurodivergent individuals) on video and podcast can mean that we have something to fall back on when we slip into a less positive space. Another tactic is that we can turn down the volume on negative self-talk or fade negative visualisations to grey and let them float away, rebuffing them, whilst amplifying the better, more positive thoughts and imaginings. Counting all our blessings and taking time to feel grateful for the little things can also go a long way towards changing our mood…and our trajectory. These are all tools that have served me well over the years and which I still turn to at the first signs that I am beginning to languish in a state of pessimism and stuckness.

There are no real limitations, except when we believe that there are, and I sometimes wonder if autism is a physical expression of this belief in limitlessness since it can be a fairly outside-of-the-box way of being. Even chronic illness, its its own maverick way, has allowed me to express a very strong desire to lead a very different kind of life to other people…because it has certainly achieved that! Certainly, the desire to remain unfettered, undictated to or unforced to do what I patently don’t want to do or, basically to have freedom and space, has always been an especially strong force in me as a kind of stubbornness that is hardwired, just like all my other neurodivergent traits. I have never allowed anything much to limit or constrain me before now and I am sure as hell not going to let a certain label or two do it to me now. So here’s the distinction I want to make: in its most positive usage, a label is really something that we use to identify with others, to find useful things out, to collaborate, pool knowledge and become stronger….but then (and this is the cursory warning) we also need to remind ourselves that we are not that thing at our very core, because what we truly are could never get boxed-up in a single label or phrase!

Final point, the ability to reinvent myself (repeatedly) has also been a very strong theme of my life and is perhaps another neurodivergent trait because I see it so clearly present in the lives of others I have encountered on the journey of self-recognition. The reality is that, whether we are neurodivergent or not, we all get to recreate ourselves every time that we set a new intention, an ability that stays with us until the day that we die, even though we so often forget. However much we identify with something or someone, we should never give up our uniqueness or independence to it, and that goes for us all.

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