One of the things that can really get me down in the pits is when I’m on some website listening to people talk in the comments and realise those people are “just” dealing with that particular symptom or group of things going on with their body…when it’s clearly their total focus and (yes) perhaps utterly consuming their lives, I feel for them, but at least they’re not also dealing with half a dozen other equally life encroaching, painful, scary phenomena at the same time as can be the case when you’re living with multiple cross-over conditions. It can make you feel horribly alone in your pain because no one else there (where you’ve gone in search of answers and a sense of solidarity) seems to have the same mix of issues as you. “Complexes” of health conditions are terribly draining, frightening, isolating things and one of the worst aspects is how difficult it is to talk about them or feel like people relate. And if you’ve ever tried to list all your symptoms for a health appointment (hoping to be taken seriously) you’ll know what I am talking about!

For instance, living with vulvodynia can be one of the most awful, soul destroying things, trying to figure out where the pain comes from and how to gain any respite, not to mention dealing with medical professionals who have no idea what you’re really going through in your personal life because of it. But what, then, if you’re also that lonely person dealing with orthostatic hypertension in a world where this is relatively rare, thus unattended or talked about, because the hypotensive version is much more common, especially since covid. Or you’re also on the trying low oxalates forums wading your way through all the bewildering dietary advice and symptoms to do with that very real yet hardly known or talked about (outside of the domain of people living with it) phenomenon. Or you’re looking for some clue how you’re meant to stay fit when your connective tissues are so hypermobile that every couple of days of mild to moderate exercise crashes you in pain and dysautonomia for the week or so afterwards. When back pain is so relentless and intense, so “always there”, that you don’t even bother mentioning it when people you know complain of acute episodes for risk of sounding like you are competing with their symptoms. Or you end up in occipital neuralgia whenever the slightest draught hits your neck so you’re having to become quite the expert of cervical instability and neurophysiology from your armchair, at the risk of seeming to have a very strange hobby. Perhaps you’re having to learn all about how to manage post menopausal hormones just like the rest of your age cohort but at least most of those other women in the usually fairly lively discussions aren’t also having to clock the effect these can have on tissue laxity or how some of the recommended remedies can make this factor much worse. In fact just so many of the things recommended for one set of your symptoms are contraindicated for another thing you have going on, leaving you falling down the cracks as ever. Not to mention all the stuff you’re having to deal with as you try to get to grips with autism, adhd or both after decades of living in the dark, not that this is a painful “condition” as such, although the sensory aspects of it can be intensely challenging, but there’s still a lot of raw emotion and altered perception to process as you come to terms with how profoundly this has impacted your life. Sometimes you can feel like a ping-pong ball bouncing from one (painful) point of attention to another, never getting to land somewhere comfortable (normal or relatable) because of having to be all over the place at once, always having symptoms of one kind or another going on and it is utterly, utterly overwhelming and exhausting. Long rant over…which is, after all, what this post is about!

Of course, it’s obvious, the person I’m describing is actually me but perhaps you also see yourself in this person (maybe you live in a similar scenario though perhaps with a different clutch of overlapping issues), in which case this post is for you. I’m not trying to pretend to be able to solve your situation or salve your emotional pain but am merely trying to assure you that I can relate and to say “I hear you”. I hear just how lonely and exhausting it is, how much you sometime feel as though your knees are buckling beneath you, even as you first wake from yet another fitful or profoundly uncomfortable night’s sleep to realise this eternal health conundrum of yours is all extremely real and then wonder how you will manage to motivate yourself to take another step through your no-doubt challenging day. How you sometimes feel like you must have blown up a few universes in another lifetime to deserve such a crappy set of apparently unrelenting, unrelatable and, probably, highly invisible circumstances that feel like utter hell to you but which other people don’t even seem to see or acknowledge fully…that is, unless they happen to live with you and get to witness just how much you struggle to manage “ordinary things” on a daily basis or how you pour all your limited energy into trying to rise above it all, stay motivated, figure it out alone and somehow get well again (whatever “well” or even halfway well is…because you’ve long forgotten what it feels like).

I’m here to clink glasses with you and say that I see you, I acknowledge your pain…and to encourage you to keep on keeping on, hoping that you find some reward and some solace from the little things that grow through the cracks of your day and which make it worthwhile or bearable for even five minutes at a time. If you’re in one of your troughs, your very worse of days, weeks or months, the times when you’re a fortune hunter out there on all the forums and websites, ever hoping for a breakthrough piece of insight, remember this too will pass and that it’s not always going to be this intense, though it sometimes feels like it is. And importantly, you’re not all alone. There are others like you, with their two hands overspilling with overlapping and often utterly bewildering symptoms that get precious little ear from medical professionals. We may feel isolated in our struggle but there are a lot of us out here.

Together we make some sort of sense out of it all as we live through the undulating experiences of our lives day by day or when we occasionally remember to make ourselves, and our profound daily struggle, visible…in moments like this one…against a tidal wave of pressure not to talk about just how hard it all is because of the culture of toxic positivity that is just so pervasive in our world these days. We all help perpetuate this when we acquiesce to its expectations, though it can be so hard to go against the grain. I have a sum total of two people in my close circle to whom I will sometimes admit a few details of my crappy health week in my weekly catch-up because I trust and value them (and need an outlet) and yet I still find myself feeling ashamed or afraid of alienating them when I speak “truth” about how I am honestly feeling or struggling. I don’t want to burden them and fear sounding like a whiner, not to mention that my rejection sensitivity clicks into action if I think I perceive that they don’t really want to hear so much detail. A whole lifetime of trying to make myself small or not inconvenience anyone plus an uncertain grasp of what is “polite” to talk about comes into play. I’m sure the paranoia is largely on my side but it’s hard not to become this way in a culture that would have us all making small talk rather than risk oversharing, being bluntly truthful or wobbling the status quo!

Although, the fact of the matter is, sometimes when we dare to share we unwittingly help release someone else from their own private torture and we frequently help to empower one another.

We already deal with such a lot when we live with chronic conditions…so supposedly having to bottle-up how afraid, exhausted, frustrated and angry we sometimes are, or the fact we just really need someone to see our struggle and truly acknowledge it, even if just for ten minutes truth rant per week, is a step too far. We need to dare to take up that much space in somebody’s life without beating ourselves up on the inside or feeling as though it’s such a crime to say “negative” things. Also, sometimes it’s just plain necessary to be real with people, as I’m going to have to be with the couple who are staying over with us this weekend, because the energy it uses up trying to pretend I’m just fine and keeping up appearances is something I don’t have right now…people in my life need to know the truth of what I am dealing with and take me as I come so I’m on a mission to be that authentic with them all in future, grimace-making though it can be the first time you do it.

Sometimes it really is OK to just admit how impossibly hard it all is, how much we struggle and just how weary or hopeless we feel…in fact it’s utterly necessary for our own mental and emotional health and, really, for the wellbeing of other people around us because what kind of example does it set to our kids and our peers when we feel we have to mask or hide away the “impolite” truth of our actual lived experience. It doesn’t mean we’re giving in or feeling defeated, on the contrary it can help us self-regulate how we’re feeling so we can pick up and keep going. So why not allow yourself to speak the (probably messy, impolite, highly inconvenient) truth to someone today and get some of it off your chest, as I am doing here…just because. There comes a time for unmasking our health struggles, just as so many of us are in the midst of unmasking other truths about ourselves, ceasing the wearisome pretence, and not just with each other where we feel relatively safe, but also letting ourselves be a bit more real in the company of whoever we happen to be with at the time; it’s important…and it’s probably long overdue.

Disclaimer: This blog, it’s content and any material linked to it are presented for autobiographical, general interest and anecdotal purposes only. They are not a substitute for medical advice, diagnosis, treatment, or prescribing. Opinions are my own based on personal experience. Please seek medical advice from a professional if you are experiencing any mental or physical symptoms that concern you, don’t suffer alone or take guesses however well-informed they feel.