Syndromes

When you “get” your first syndrome, like a stamp in a book, its as though some part of you squirms deep inside: “nooo not one of those, no one will take me seriously, they’ll assume I’m some sort of hypochondriac, a faker” (and you’re not far wrong). Is it just me or do I recall a time, not so long ago, when the word “syndrome” was used, in common parlance, as though virtually synonymous with “made up”, “without real diagnosis” or “its all in your head”? And the challenge doesn’t end there, especially if you start to collect more than one.

Because syndromes very often overlap one another, this is far from the rarity it sounds like, so whether you discover you have picked, from the variety chocolate box, the one called fibromyalgia syndrome, chronic fatigue syndrome, postural orthostatic tachycardia syndrome (POTS) or dysautomia, mast cell activation syndrome (MCAS), joint hypermobility syndrome or one of the Ehlers Danlos syndromes, central sensitivity syndrome, irritable bowel syndrome, Asperger’s syndrome or something I’ve missed out here (my experience encompasses the entirety of that list), you are in for the kind of life-style complexity that no one would knowingly choose in advance.

And it can be lonely. Because, quite aside from all those the medical “expert” detractors (as in, they don’t quite believe what you are describing to them…it all sounds so far-fetched) who, in spite of getting somewhat better at acknowledging these syndromes individually, continue to be baffled and ineffectual, even down-right obstructive, when it comes to managing the overlaps between two or more of them at a time, it can feel as though you are all alone in a world of free-fall health chaos. If some voice in your head keeps telling you to get over it, to stop being such a health bore going on about weird symptoms because no one wants to hear and perhaps its your very focus that is making you so unwell, the bigger part of you screams the primal response of “How?”, because these things affect every single nuance of your daily experience.

As I just said to a friend who now has overlapping syndromes herself (since having covid early this year), and speaking directly from my own experience, you live with these syndromes deeply and in such a complex ways every day; there’s nothing this experience doesn’t reach into or affect. The amount of energy and strength I have to “do” normal things is so sparse…added to which I also have EDS which makes my connective tissue suddenly weak when over-egged…which then forces you to prioritise big time, also to self-advocate, to self-nurture and to stand up for yourself in situations where people expect different from you…you learn to make your own rules and coping mechanisms and develop thick skin.

There’s likely nothing you can eat, no environment, nothing that you come into contact with, no activity you can consider, in fact not one iota of the fine details of your life, that you can take for granted any more, when you have syndromes; it all takes consideration. In my case, one micro increase of any of my numerous triggers, slight over exertion, a dental appointment, change in the weather or phone conversation with a chatty friend can tip me over the balance for many painful hours of crackling nerve pain, connective tissue insufficiency, heart palpitations, blurred vision, migraine, digestion issues, blood pooling, numbness, sudden flu aches, feeling strangely oxygen starved, widespread pain, brain fog, dizziness, exercise intolerance, sudden insomnia or wipe-the-floor fatigue (and I could go on). Sleep, by the way, becomes the domain of no possible mastery; good phases, yes, but it can suddenly tip over the edge because it now dances to its own variable tune. Just when you think you have it cracked, or are sleeping perhaps too deeply and extra long, you are suddenly awake at 3am every day or unable to fall asleep for 2 hours at the start of every night, gripped in hot flushes and odd stomach pains plus endless trips to the bathroom, racking your brain for whatever it was that changed your routine on a pinhead. Vain chance, by the way, because it could be something as minuscule as a needle hidden in a haystack…as is the backstory of all your most affecting life experience these days; the perpetual, volatile mystery of your magical mystery health tour. The search for answers, for improvement, for grasp or rhyme and reason, just goes on and on and on.

So here’s one very big thing you realise when you have syndromes (eventually); there is probably not going to be any big fanfare recovery, no back to how it was “return to normal”, because this is your new normal and you learn to live with it, to adapt, to modify behaviours, to tilt your life a different way and (hopefully) to appreciate the new view.

Whereas, before, pushing harder, being more determined, “fighting” the so-called foe could have been expected to get you somewhere, eventually, you learn that the only headway, here, is to go softer and slower, to allow, to remain fully present, to just breeeeathe through it, remaining curious, following the tenuous thread of new light, expecting the unexpected and coming to know that, where there is one bewildering thing going on, there will likely be more. This is your new life. Adapt or be damned.

And if all that I share sounds “niche” then think again because there’s a phenomenon I’m noticing take shape outside of this bizarre and lonely World of One, where my own voice uttering abstract accounts of a life turned inside out by health foibles used to echo in the void of other people’s incomprehension…I am no longer alone in here.

In this extremely bizarre Year of Covid, where the long-haulers are starting to speak their piece, I am finding countless others share first-hand experiences on the topic of syndromes. Because, in their ranks, I find copious numbers declaring that they have newly diagnosed with some of the very same syndromes as me…POTs, MCAS, chronic fatigue, the lot. Blogs and forums are suddenly full of gatherings of people sharing their experiences, pooling their new awareness of what it is to surrender control of one’s body to a whole load of new masters that declare relative mayhem to be the new regime. To be honest, I’m not in the least bit surprised, I kind-of expected it: after all, my particular pot of overlaps fits the definition in some part, if not every detail (genetics and trauma also come into the picture) of a post-viral health crisis. It all began with a flu “jab” and a flu-like illness I couldn’t shake off for well over a year and the cascade into crisis, and other symptom, from that point, was frighteningly rapid

Some of them talk optimistically of regaining precious stability in their health…and, yes, I would concur this is possible when you get used to pulling on the ropes in the right order…but they also talk of wholesale recovery on the horizon and, on that one, I would urge for better-managed expectations because, speaking as a very-long-hauler myself (and to reiterate what I just said above) I’m not sure there is ever the possibility of that hallowed return to so-called normal so much as reconciliation with new-normal, which is a slippery fish!

And, here is the wisdom of 15 long years in the mire, sometimes acceptance of different is the beginning of better.

From now on, you will have to master two paradoxically coupled things: first, taking some direction over your choices, as in better choices, that work best for the microcosm of your particular health biome….and, secondly, learning how to let go, to utterly surrender to the experiences you are having and go easy with feeling (as compared to your old life) utterly out of control, because sheer panic over loss of control is not at all helpful. This is quite some paradox to master…direct with intention yet let go of control…but then our growth factor is often found tucked away inside the task of embracing such paradox!

When it comes to that steady hand of direction you now need to exert, I really speak of managing outcomes in favour of your particular needs and limitations, not the kind of forced wellbeing that might have had “old you” maintaining a strict gym habit or practicing perfect asanas. That old tyrant will have to back off now: this is about subtlety and listening to the body, patience and self-love in the face of all and, of course, adaptability at very short notice.

I know two people that are amongst the growing tribe of covid long-haulers. One, an acquaintance of many years, looks ghostly with a kind of deep weariness and hollow fear glinting out of her newly deep-set eyes as she scuttles and rebuffs engagement, nervously, where once she was so warm and effusive. She is seven months in and it has all taken its toll. I tried to offer encouragement with her healing protocols but she wasn’t receptive and we are not closely associated.

The other, also seven months into her recovery, is an online friend that I have got to know pretty well over the years and I have been following her regular updates, including her realisation that POTs and MCAS come into her picture. When I reached out to encourage, she expressed surprise to discover I have lived in this territory for so many years, quite undetected by her close interest in my life (for those of us with syndromes, our smiling photos don’t always tell the story of our dreadfully complicated lifes…we simply don’t necessary LOOK ill on the days we might deem to have a camera anywhere near us). She has now got to know quite a number of people with these syndromes, on forums and via blogs, who share about their efforts to integrate them with their everyday reality plus the endless challenge of striving to be taken seriously by doctors, friends and family.

We, of course, immediately pledged our support and encouragement of one another but this got me to thinking, what is it that I would tell her or others in the same boat right now, if I didn’t think it was too much for them to digest, or accept as advice from another, at this early stage? What would I go back and tell myself if I could?

One, of course, is to say please don’t expect too much, as in don’t make that longed-for return to so-called normality become the be-all-and-end-all of your efforts and focus. I know, its a hard one to give up but there are gifts and a new kind of ease to be discovered on the other side of accepting the new-normal, hard though it is to define.

Another is to urge that there is no “one-size fits all” in this territory. Take what resonates and leave the rest but be very suspicious of any so-called experts declaring that they have “the” healing path all sown up for you. Functional practitioners can be useful people to follow and they have often made much more headway in the wild-and-wooly land of overlapping syndromes than conventional doctors, but please bear in mind they often speak from the deeply subjective place of their own personal healing path or specialism (and thus the symptom trend of the type of patients most likely to stick with their protocols or write positive reviews…but what about those that didn’t work out) and you simply may not have the same health triggers as they speak of. For instance, I went to see one whose “thing” was gluten and so he regarded everything as the fault of gluten in the modern diet, even though I had eliminated it (he now wanted me to give up every other kind of grain). Another I follow for her blog insists upon equally, if not more so, devastating diet modifications, even to me, as someone whose intake has altered beyond all recognition in the past ten years. Any insistence upon eliminating whole swathes of particular food groups and natural ingredients might be about to deprive you of the very thing that might otherwise have helped to heal you (I have had a lot of success with Anthony Williams (The Medical Medium)’s protocol and he often contradicts standard advice from other experts in the field, especially those who make an enemy of natural foods).

In other words, LISTEN TO YOUR OWN BODY first; in fact, honing intuition and coming to trust your own mastery status in the domain of YOUR body (you could say, claiming it back at last) is one of the biggest gifts of the whole experience. You always know best as long as you are tuning in, as best you can, to what you body is trying to tell you.

Use forums and bogs and all those other online resources to connect and learn…yes…but don’t plunge too deeply into them. You can quickly get swept away on a sea of other peoples woes and difficulties; these are not your stories and your version is utterly unique. So yes, by all means, compare and pool information, find people who understand what your version of a bad day feels like, but don’t wallow or assume outcomes because of what they went through and remember to keep plenty of clear time away from the noise of such group conversations or they might sweep you away. For heaven’s sake, don’t start to identify with your syndrome(s), and you will know you have done this when you purchase a t-shirt brandishing its word in the name of increasing other people’s awareness of it…no, don’t do that thing unless you want it to stick to your energy like glue!

Know your triggers (I said YOUR triggers) and allow that they could be weird sounding to anyone else…yes, the symptoms may be classic of the syndromes you have but what activates them will be personal to you. If there’s any rule of thumb, notice how symptoms may track circadian and seasonal cycles (this can teach you a lot in a way that most medical advice won’t direct you towards…a measure of how out of touch we have got with our own natural health), probably avoid extremes of heat and cold, and in fact generally avoid extremes of anything!

Allow that this thing has something MASSIVE to teach you, yes that it is the highest outcome you have aways gone after, that the fact it is dressed up as such abject confusion and hardship is a smokescreen for pure potential and master-level evolutionary opportunity. No two days will every be alike from now on: just allow that realisation to register for a moment and embrace its scope for ensuring you will never fall asleep at the wheel of life again! Its all too easy to make life routine, to follow trends, to do as you are expected or told to do when you remain unchallenged by life or when your ailments are so mainstream that you unthinkingly hand-over control of your recovery management to “those who supposedly know better”. When none of that applies, you grow up very quickly!

For goodness sake, don’t claim the expert hat or package what you think you now know about syndromes into a product to sell to other recoverees…really….please don’t go there, at least not for the first half dozen years or so. I notice this air of expertise starting to form amongst the alpha personality types in post-covid conversations and, whilst its good to gain some confidence in the path you are following, please allow that this might not mark out “the” path for others and a BIG part of the recovery process is to be found in some sort of rite of passage you get to go through, which is the need to STOP those old habits of trying to assert you know best or feigning confidence you lack in order to reassure. Rather, listen to you own body and cease thinking the world awaits some sort of guru with all of the answers.

Part of that, beware those who assert expertise higher or louder than your own innate knowing and note your own intellectual arrogance (or susceptibility to others’) in this regard. Each person’s experience, and instinct, is utterly valid in this domain…and requires no further validation than that! I sense these syndromes are coming up into human experience to invite us to experience a whole new way of knowing what we think we know, compared to all the dogma of old; a way that is open-ended, adaptable, inclusive of individuality and always (I mean always) prepared to listen, change directions and evolve.

Learn to be confident in what you know (without brandishing it; this is for personal use only). And realise that what you know will, likely, change every few days or even hours. If you can get over the sense of living on quicksand that this affords you then you are doing well. If you can drop the hurt pride that you aren’t able to spew labels, diagnoses and other such information as fluently as others with the same syndromes, worry not: it’s no badge of honour, or mark of progress, in here. If it helps, learn a short spiel you can use to quickly, and succinctly, explain to others that you have health challenges that might affect your engagement with them. Labels will remain, at best, handrails to pull yourself onto tenuous dry land or a means of, generally, grouping coincidences of symptom that you have started to notice into approximate areas of further exploration but we are all quite some way from really knowing what we are talking about here and there is no golden pill nor expert in the field. It will be interesting to see what the next few years bring as more people become invested in researching these elusive areas of health yet who come to realise that to box them up in tight definitions is to cease listening to what they are all about.

Last but not least, ponder that the one thing in common, perhaps the singular root source, all of these syndromes share is fear. Its likely that fear spawned the experience and, if you don’t believe me, hear me out when I say that whilst we may have a genetic predisposition to our syndrome or may have come into contact with a virus, perhaps both, its the presence of fear that likely activated this wholesale systemic confusion in our bodies.

This is why just so many people who have gone through covid are laid wide open to these syndromes taking hold; they were in fear before it happened, then they faced up to their worst fear when they became infected and now, in many cases, they reverberate with all the fear they now carry because of the “loss” of their precious health, and because of what happened to them so unexpectedly, how abruptly it altered their life, how it may one day happen again, how fragile their “old reality” turned out to be in the face of all this; yes, they also go into abject grief over loss of their old life and the paradigm of relative safety they once lived in. I know because (without it having been covid, although a viral infection certainly came into it, as above; standard flu or Epstein Barr can have these effects if the ground is primed) I have been there. I have gained many insights, over the years, that have pointed at this being a case of distilled, existential fear that somehow became embedded in my body, as well as (or attached to) a viral infection, manifesting as all these long years of chronic health issues; which is epigenetics in a nutshell.

Fear seems to be the arrow point on which the circumstance attaches itself to get straight to the heart of our weakest spot, where genes or injury or early life trauma may well have left the potential for these syndromes, yes, but its this fear factor that allows the nervous system itself to be tampered with or rewired utterly, if you will. So, from now on, as well as your syndromes being ever present (at best, going through a quiet patch if you manage your lifestyle well) please be aware that you need to be fear-aware for the rest of your life, because the slightest crackle of it in the air will, likely, trigger your symptoms back into action. Learn to know what fear looks and smells like; then familiarise with, and learn to summon, its antedote, the frequency of love.

The good news here is that you now start to assert proper boundaries at last, when it comes to fear-mongering; you will learn to have no truck with its propagation and you will develop such courage in your own heart. So, instead of despairing, become aware of this potential and make it the core of your life, to help you go after its very opposite; you wont regret it. In time, these syndromes cease to define you but they become the infrastructure upon which you build a more evolved version of who you are, because you are no longer the rather naive and rosy-tinted individual who leant so hard on what you were told life would be like; instead, you are laid wide open to experiencing it all in gratitude, day by unexpected day.


Related:

Have we been thinking about long-haul coronavirus all wrong? – Time.

This article asks, is there an up-side to all these new cases of chronic post-viral illness? Those who have been struggling to garner attention, and funding, for CFS, fibromyalgia and “other contested illnesses” for years are starting to think so. It takes a lot of patients, and vested interest, to make a study of how these illnesses come about and why they take such a hold on a person’s longterm health.

“The influx of new patients could go a long way toward figuring out why, exactly, a viral illness can last forever. Though there are multiple theories in the ME/CFS research world, Komaroff believes the cause of the condition can be traced back to a part of the brain that kicks on when you’re sick—the part that saps your energy and appetite so your body can focus all its energy on clearing an infection. “This center in the brain gets flicked on, but for whatever reason it never gets switched off,” Komaroff says. New research efforts spurred by the pandemic could help determine if that’s really happening, and why.”

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