Fibromyalgia as an expression of “stuckness”

This morning, I asked my body what it was trying to tell me right now. For context, this past week I have seized-up in an episode of extreme muscle rigidity, most especially to my legs which feel like two long rocks of pain while my joints have become excessively hypermobile (for my piece on how I think these two are related, see my last post). My whole body is in pain, my skin is burning and the fatigue is relentless… full-throttle fibromyalgia is back. More specifically, this is “Septemberitis”, as I have come to know it over the years as it happens like clockwork every year!

So as I mentioned, I asked my body “what’s up?” and didn’t give it too long to formulate a response, nor did I have to. I had been listening to a podcast with psychologist, researcher and writer Michael Jawer who was talking about thin and thick boundary people and some of the health conditions those types tend to gravitate towards when their emotions are trying to speak to them. Fibromyalgia and chronic fatigue, allergies etc tend to be (no surprise) associated with thin boundary people but thick boundary people can have a load of health issues as a result of hidden emotions too; only, their bodies tend to lock emotions up for a longer time, not knowing how to deal with them so much (think stomach ulcers, tumours and heart attacks).

Being thin boundaried myself, and then some, I tend to notice the quick responses between my emotional responses to stimuli and the effects in my body and, as such, I can tend to feel overconfident that I know what is going on with me, as though I have it all (if anything, a little too well) covered. I’m very highly sensitive and the world around me tends to play me like a keyboard; so, after a time, you get used to all lthe different notes. When the effects are so immediate, you get familiar with whatever triggers you and you start to formulate a sort of language between the pair of you.

Yet this issue with turning to stone every September, out of the blue, still dumbfounds me, especially after a year of making so many positive strides. Is it possible I still have some unseen triggers, like a thicker boundary person might have; ones that speak to me of issues that are historic and possibly not even relevant any more but, because I didn’t handle them when they first triggered me (perhaps because I wasn’t mature enough or at liberty to respond to them at the time), they have become deeply buried in the infrastructure of my physiology, causing “automatic” responses to triggers that may not even be presently threatening to me (which is the nature of a trauma response) but which my body is playing out on loop? Of course, this is a question I’ve asked countless times before on the journey but this September thing is my most lasting and sticky problem.

So, getting back on track, I asked my body why are you so rigid and locked-up right now, why have we turned into painful concrete yet again after such a good year, what did I do wrong? And it told me immediately “I feel stuck”. Of course, the metaphor appears so obvious when it comes straight from the body, spoken in body-speak, that you almost have to laugh outloud when you get the message at last!

Now of course it didn’t literally tell me this, there was no voice in my ear but this was a very strong instinct, a seamless repartee that flowed straight back at me when I made the enquiry and, as we are wont to do, I knew there was truth in it because I felt it was so in my gut. I had hit the nail on the head with this feeling of “stuckness” frustrating me right at my core.

And yes, there are areas of my life where I really do feel so stuck right now, and there is frustration and even a bit of anger in me that I cant seem to make these things shift yet, that I still have to be patient for another two or three years…this is all very true. However, it’s also true in the summer and yet I don’t turn into a lump of concrete every day; yes I have flares but not these prolongued periods where I can hardly move for days or even weeks at a time. I can also rationalise my stuck situation and deal with it a whole lot better, when its not September…because in September my stuckness becomes more than visceral, taking on all the trappings of litreal and physical demonstration, through pain, to really drive its point home!

I guess, it feels more true that I’m stuck in the autumn and winter months because I am grounded at home much more because of generally poorer health and the vagaries of weather, thus there is much less variety and stimulation in those seasons (and, now accepting I am ADHD, I have finally come to realise the importance of positive stimulation or, otherwise, my system goes off looking for other things to stimulate it!), so I get bored with the daily grind, the limitation, the lack of options and interests; there’s only so much you can do when you are in enhanced pain and the days are dark and short. Meaning my own state of stuckness gets rubbed into my face much more from September onwards. I’m no longer able to be outdoors alot of the time, for starters, but its more than that; all those other things that have me feeling stuck press home more when I’m forced to be in the same room and in fact on the same sofa most of the time; my stuckness becomes like a snake eating its own tail because what choice do I have? My very abilty to chose feels vastly diminished.

For instance, I desperately want to move to a different place, to start over somewhere else, something we’ve talked about for years, we even know where we want to move to now and can see it clearly, and yet the time just isn’t right for us at the moment, we have to hold our horses . There is nothing more frustrating than spending a decade and a half in the same house with a chronic illness, day after day, and then not being able to change-up that routine, to refresh it, as you start to feel better; when it even begins to feel like the continued progression of your recovery depends on a change of scene or you feel you will slip backwards. Yes, I feel stuck, that feeling is most certainly there and I acknowledge it freely. After all, haven’t I waited and waited for life to get better, to see light at the end of a tunnel and now I want to rush to embrace it before it slips away again.

However, at this time of year, it goes deeper because, historically, its a time of year when I always felt most stuck, year after year, for decades. For instance when the summer holidays ended and I had to return to school, it always felt like a sort of death to me, as though all the things that made me happiest were swept away for another year; forced to be trussed up in a uniform the same as everyone else and herded back into the fold, an environment where you had to seem to “fit in” all the time in order to survive. Added to this was all the deepest dread of exclusion, of friendship “politics”, the constant bewilderment at other people’s behaviour and all those dreadful feelings of having to conform and deliver whatever is expected of you, all of which can be so very hard for someone with neurodiversity (a lot of parents these days consider home schooling but that wasn’t an option for me). That’s a lot of years of deep frustration, dread and even anger bottled up in my body, mostly associated with this time of the year!

Historically that’s how I felt in September, as in, it was as though my life was now doomed to become highly constricted, orchestrated, regimented and most of my time now owed to other people’s agendas, no longer at liberty to pursue my own and always subliminally frustrated because to think outside the box is to be targetted in such an environment so you are forever forced to modulate what you would really like to say or do, biting your tongue, curbing your differences. As a survival mechanism, I became such an abject perfectionist, so consumed with pleasing, being conscientious and staying way off radar to anyone who might single me out for unwanted attention, thus a lot of my free time was also spent getting things just right, getting stuck on tasks that should have taken far less time or just basically worrying myself thin during term time. Compared to summer, it was chalk and cheese and it used to feel as though all my morale and innate passion for life, which (being an introvert) grew out of having my own interests and pursuits and being self-directed, not from being around other people or working in teams, was being syphoned away, putting me into survival mode. I was left “coping” as best I could for the foreseeable few months which, in September, felt like the longest time ever, spread out far into the distance ahead. A prison sentence!

So, is this seasonal reaction a case of me (still) feeling cranky about “stuckness” and not acknowledging to myself why? Is this me (the thin boundary person) having a rare thick boundary moment, which is to say I am faced with dealing with an emotional response that has been left unattended, buried deep inside my body for way too long? Its more than possibly a contributing factor in seasonal pain?

Of course, I’ve been aware of the connection with schooldays trauma before (I always called it “my September thing”, a sort of blues that would come over me, suddenly knocking all my stuffing out) and yet I never really looked it straight in the eyes as such a present day problem, nor have I fully acknowledged it as an ongoing trigger of my annual health crash in September; a literal metaphor for “stuckness”. I’ve tended to refer to it as “that old thing” and not give it a second thought except as some sort of bad memory or feeling in my gut that I try to dismiss.

Because, though I have known for a long time that September doesn’t have happy associations (and they were, until quite recently, brought vividly back to life every year because my daughter had such similar reactions to “going back” to school, year-after-year and I would empath all her distress) I have tended to dismiss all that as water well under the bridge. How could I still be dealing with this thing in my 50s?? Like a sort of school-days PTSD. It sounds rediculous!

But not if the feeling of “stuckness” is still there and, more exactly, not if there are still places in my life where I feel I am still not attending to how stuck I feel but, rather, burying the feelings away out of sight without acknowledging or hearing them out, giving them appropriate time of day. If I am feeling stuck in any portion of my life I deserve to be able to own up to that without guilt, to be able to express my frustrations even if they are not immediately solvable and to do all I can…anything…to alleviate the pain of it, however small those attempts.

Here’s the thing, if I am feeling trapped…at all…in my current circumstances then this time of the year is likely to drive the feeling home far more than at any other, because of the historic context. There’s nothing like a replayed trauma to trigger the original one off; and a “trauma” doesn’t have to involve overt physical harm but can be a far more subtle state of not feeling seen or having your needs met. Especially if the original trauma happened in childhood and never got addressed!

In my case, this is likely to be especially so if the changing seasons, cues in the weather and less opportunities to be outside mean I am forced to buckle down and spend more time doing extremely routine things at home, and far less time doing the kind of things that stimulate me in warmer seasons. This will likely fill me with utter dread, whether I acknowledge it or not…and perhaps my body is acknowledging it for me, as pain. The catch-twenty-two of the situation is that, if my body then has a crash, because it is feeling so triggered by the time of year, then I am even more likely to feel “stuck” by my sudden incapacity…and so it continues, round and around, a chronic state of health in the making.

So, lightbulb moment, I now suspect even extremely thin boundary people like me and so many of the type of people that end up with fibromyalgia (often those who are highly reactive to immediate stimuli and generally quite in touch with their emotions) can have thick boundary areas when, for example, the thing that bothers them feels relentless, historic or like it simply can’t be overcome or is non-negotiable (for instance, a particular time of year that sets you off might seem like this since you can hardly avoid the seasons). When that “thing” triggering you is so old and ingrained that you literally can’t remember life without it, it feels like part of your life-furniture, always there and taken for granted and, as such, its so very obvious to try to ignore it. In time, it becomes a sort of blind spot! Yet it can still continues to trigger emotions beneath the surface, which you probably aren’t handling because you are unaware of then or trying to ignore them. In essence, espcially if you have chronic health issues, you become so used to dealing with far more pressing triggers in the here-and-now that you pay this old fossel no attention at all, really. In such cases it gets buried away our of sight…yet may continues to feed its toxic effects into your state of health, especially those that are the very hardest to interpret or make sense of. It could even be a prime suspect in why your health can’t seem to shift towards a fuller recovery!

For instance, in my case, returning to school every September could not be avoided as a child with no say in the matter and that dreadful awareness of having “no choice” at all, of being doomed to the inevitable, fed into a sense of helplessness that coloured all my most formative years; those highly influential years during which we all build the core belief systems through which we filter our entire outlook on life. If that sense of “no choice” is still lurking in my expectations at this time of year, how much does that loss of morale feed into a sense of enhanced “stuckness” that might express itself through the body as pain and rigidity? How might any situation that feels stuck or non-negotiable fill me with the same sense of dread and hopelessness, of stuckness and despair and of being faced with a long-hard slog up ahead, because of the subtle reminder of those past experiences? Can the dread of school really have instilled such a hopeless and demoralised state in my psyche?

For a more extroverted, less neurodivergent, child I daresay September was no problem or may have even been looked forward to (my husband always loved going back to school) but not so for me; quite the opposite and it often took me weeks to settle my emotions and get into any kind of groove that felt like coping, though I always worked exceptionally hard to look as though I was OK because I didn’t want to draw attention to myself. All of this took immense resources; beneath the surface, I would feel chronically fatigued and emotionally bleak at this time of the year, thankfully getting somewhat better as I found some sort of footing based on repetition and routine as the months progressed (but then I would go through the same feeling of starting things from scratch the following year; for me, there was very little sense of acruing any progress I made, especially in social scenarios and other areas that mystified me).

It felt much the same when I began my last office job several years ago, which was also at the start of the month of September, having been contentedly self-employed from home for 10+ years. At the ripe old age of 36, all the same old feelings of dread swamped me as I was forced to reluctantly give up all the trappings of my flexible working practices and just about all of my professional autonomy to work in a team and follow a strict protocol in a place where every minute of my day was preallocated and where overzealous middle management watched with a critical eye over everyone’s shoulders; it was about then that I first began to get sick. As I tend to say to myself these days, there’s an “aut” in autism for a reason…I give of my best when I am allowed the space to be autonomous!

So how do I overcome this effect or at lease loosen up the thick layer of silt that has settled at the bottom of my subconscious, where it has become foundational to my physiological reactions to this time of year, so I can stir up a new body-reaction to a season that is now utterly benign (though my body doesn’t seem to realise it)? These days, I have about as many choices in September as at any other time of the year, asside from those relating to the weather…assuming my body doesn’t let me down!

Well, first I shine light on it by realising he potential for this being a historic state of “stuckness” as above, and then by really noticing when and how it happens, paying attention to subtle physiological responses in the body, showing compassion to myself and being patient and attentive when they occur. I start to notice details such as when do I have most tension in my body, is there any correlation between time of day or other circumstance and (say) the time of day when I used to have to get ready for school or having to go back on a Monday morning (a reaction that continued to haunt me in that job I spoke about, in which I always used to feel nauseous from Sunday night onwards)? Can I give it descriptive words such as “dread” or “fear” or “resentment” or “anger” and can I sit with those emotions, allowing them to have their say, can I journal them or express them through movement?

Can I then sit with myself like you might sit with a child holding their hand and point out all the ways my life isn’t like that any more, how I now have many more choices, can do things differently, am not sold-out to an agenda that doesn’t work for me (and if, in your case, this isn’t so there may be room for brainstorming ways you could make this so, starting from today)?

Can I avoid being too “timetabled” in this season; can I stay playful with my time, mix things up, avoid (say) spending all morning sat at a desk or doing anything that triggers memories of those old routines? Can I lean towards the creative and away from the academic (I am prone to hyperfocusing and being deadline driven at this time of year, out of old habits I guess, whereas I am far more happy-go-lucky in other seasons…time to mix those up)? Can I be more playful with my life, more spontaneous, get out of the house more even if its just to sit on a bench or go for a coffee, plan more trips and be more spontaneous? Can I luxuriate in the fact I don’t have to be in any particular place at a particular time? Can I make sure to play soothing music during the school rush that makes the traffic mount-up in noisy queues outside my house on these September mornings, after the relative lull of summer, or avoid sitting where I can see all the kids in uniforms stood at the bus stop opposite my door, avoid driving around town when the kids are pouring of out of the schools? Can I target anything that will accentuate we are no longer tied to the school routine that has dominated so much of my life until now given my daughter only just graduated since it has nothing to do with me any more? Of course, there are various therapies you can try to help you through the territory (see Michael Jawer’s book, below, for more on what might work depending on your emotional “type”).

Whatever your emotional stuck point happens to be, what I have suggested above are simply examples of how you can strive to do the very opposite things to normal and see if they don’t help neutralise the old response.”Doing the opposite” is in fact one of the key strategies suggested in Todd E Pressman’s very excellent book “Deconstructing Anxiety”, which I recommend for effectively navigating your own way out of the anxiety trap: he also runs workshops and has a lot of resources to offer if you sign up for his newsletter via his website.

Now (ironically) its my body that makes me feel most stuck at this time of the year! It always astonishes me how I can transform from being this fairly active and outgoing person, who was pounding pavements in August and dancing at a wedding in July, to suddenly being well-and-truly invalided in just a matter of days at this time of year. Objectively, it’s bizarre yet truly fascinating to me that, all these many years later, I may still be having these strong physiological reactions to the season of “back to school” and, though I may be barking up the wrong tree, it really does feel like there is some truth in the idea that they are related. The body never lies; its just that it may take the long way about telling you something if it feels you aren’t listening or doing anything about it and the end result can feed into the state of your health, for sure!

I’m not saying this is “the whole reason” or even “a primary reason” for something as complex as fibromyalgia, chronic fatigue and the whole range of other pain conditions I speak about here as there are just so many other factors that I have talked about before….but I do wonder if this idea of “stuckness” is “a” factor worth considering when it comes to chronic illness in general. At some point in our lives, a foundation stone for a state of chronic health was laid down by the body, and though the symptoms that follow are so diverse, also so very present and real when we stand in this moment experiencing them, the original tripwire can be something as ephemeral as not feeling like you are safe, fit in or are wanted, perhaps not feeling seen or accepted the way you are made (if, say, you are neurodiverse) and, perhaps, having first feeling all these overwhelming emotions a very long time ago. When the child that resides inside us was the first one to feel the particular emotional pain, our reactions can get stuck at the level of coping that we had when we were that small child but what we need is for the adult we have now become to address those emotions by giving them some attention.

These states can lay down emotional collateral, to be paid back later when they call in some attention via the physical body, so its certainly worth exploring their potential to be as active as ever, even many years later, perhaps by tripping you up whenever similar circumstances arise to those that triggered the original emotional state. Now is the chance for the adult version of you to step in and help that inner child to heal what was left to languish inside of them so long ago. We are not the exact same person that we once were and we do have so many more resources now but, really, its the beginning of the dialogue across time that starts off the process of healing and all that really takes is awareness and compassion.

For the record “Autistic adults, particularly women, are more likely to experience chronic ill health than the general population” and they are particulalrly “prone to developing a central senstitivity syndrome” (“Autism and Chronic Ill Health” 2022). Likewise, A recent study found patients with fibromyalgia syndrome have a higher rate of co-occurring adult attention-deficit/hyperactivity disorder (ADHD)” (Study Suggests Screening Patients with fibromyalgia for ADHD) and for more on that see my recent post on the topic. In hindsight, the fact that school didn’t meet my particular needs as a child was largely down to my unrecognised ADHD which, in my case (as is typical of many girls with ADHD) only made me even more perfectionist and hyper-consciencious than ever, thus extremely anxious and exhausted as a result of my perceived need to try really hard to fit in and avert adverse attention by seeming to be completely self-sufficient and on top of things; some task I set myself! There are now numerous resources internet wide about the common link between ADHD and perfectionism, especially in females, but wrong stereotypes about what ADHD looks like have kept people like myself from being identified as struggling or indeed neurodiverse at all, thus very seldom offered help or accomodations. Both fibromyalgia and chronic fatigue syndrome are known to typically have a traumatic onset, whether physical or psychological trauma, and I would say feeling utterly out of place at school and struggling mightily to blend in would count as a traumatic event. In fact, fibromyalgia and CFS are starting to be known to have numerous triggers in common with autism but there clearly needs to be much more research into the topic.

These days there are many more resources than there used to be for learning to interpret and handle your emotions or listening to what your health challenges are trying to tell you. I’ve already mentioned Todd Pressman’s book and two more off the cuff are The Language of Emotions by Karla McLaren and Michael Jawer’s book on how having thin or thick boundaries can correlate to certain health conditions “Your Emotional Type: Key To The Therapies That Will Work For You”. Core to it all, the answer is to keep being curious, asking questions of your body rather than taking pain as a definitive answer and seeing what comes up for you in random moments, perhaps in your dreams, when you journal or stand in the shower…keeping that door propped open so that, when the body speaks, you are truly there to listen and respond.

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