“You’re looking really well”: The curse of the invisible disability

As any regulars know, I am in the midst of a severe flare-up of ME at the moment. That’s not to say I don’t have ups and downs, better days and less so, the same as usual but that my baseline has shifted for a number of weeks and is now much (much) lower than usual. On worst days, which has been most lately, there is no negotiating and I can do very little at all but sit the day out but on better days I can push out a few stops to make things happen, if I really want them to, but at a cost.

Most people in this space are also probably more than familiar with spoon theory. The theory goes that when you have chronic illness (and, interestingly, the same analogy has been adopted to describe some of the struggles of neurodiversity, such are the similarities) you only have a cutlery drawer containing so many spoons or units of mental, physical and emotional energy at the start of each day, whereas other people have an almost infinite amount or at least can generate more as needed. Those spoons are not all the same, being divided into subcategories such as executive function, emotional resilience, physical exertion, sensory benchmarks and so on and each person will likely have their particular categories that are always one or two spoons shorter than the rest from the very start.

In addition to spoon theory, there is fork theory; those forks representing triggers that may interfere with your capacity to cope. Again, these likely come under different headings such as sensory triggers, certain social situations, a low capacity for coping with changes to routine and so on. If you are already running low on spoons and a couple of forks show up, you are probably in a fair bit of trouble!

Another thing about spoons is that, while you may be able to borrow a couple from another day, that will always leave you desperately depleted the following day or maybe for quite a few days afterwards, leading to a crash. So you learn, pretty quickly, that going into spoon overdraft has a very hight price to pay. Sometimes its worth it, but you have to be fairly sure of this, especially if you know you are going to need more spoons than usual in the coming days.

That’s where I am right now as we have a pretty demanding month ahead, and not all of it unpleasurable but some of it will be pretty hard. With a family funeral to attend soon, I know that, if anything, I have to hold a few spoons in reserve for the next few days but then its also my birthday this bank holiday weekend and its important to me…more so than ever this year…that I reaffirm my enthusiasm for life by doing what I really enjoy in this particular weekend. In a way, how I spend these few days is the morale booster of all boosters and sets the benchmark for my whole year ahead. Once, I had a particularly unwell birthday and it felt like the start of a slippery slope that year as, lodged in the back of my mind, I always had the recollection that I “hadn’t even been able” to summon one or two extra spoons for this once a year event …and I don’t want to go there again.

Also, I happen to particularly LOVE this time of year as the blooms start to come out, the woods fill with bluebells, everyone seems to put on their lighter clothes and their happier faces and the skies fill with birds in full activity and song. In particular, I get to put on clothes that feel much more like “me” and to feel lighter and more comfortable in my body as a result, compared to winter’s long slog of many layers to cope with my eternal temperature disregulation.

It also happens to be the weekend of one of the big art trails around here, one that I used to take part in when I had the stamina to do so but I still like to go along and support other artists, see what they’ve been doing, maybe pick up one or two pieces to cheer me up.

So yesterday, we did just that and went around, alright, far less of the trail map than I originally hoped but two venues seemed about enough for me, without overdoing it, and I picked good ones. True to form, it was really lovely and the sun came out with real warmth, so I put on a lick of make-up to lose the sallow sunken-eye effect of weeks of illness, I put on my brightest spring clothes and an equally bright smile and…as is my way…put my very best foot forwards because the way I dress and appear really does affect my confidence and mood, especially in social settings (I see this now as an autism thing). I’m no wall flower when I feel like dressing up and just doing this seems to carry me out the door and into the best way I know how of putting on my social head, which I can still carry-off and enjoy, for all my recent lack of practice.

And so we had some great chats with people, which was also a real tonic. Overall, I came away glowing from the feeling of having had more social interaction with anyone outside of immediate family for a very…long…time!

So why was there still a slight sting in the tail or, should I say, a giant fork in my day? Why did I feel as though I had only scraped the surface of “being” with people, which is what I was really craving to do (what we are all designed to do, though it always seems to be more elusive for some of us)? I guess what got to me, sneaking under the wire in that way that always makes itself know to me in the middle of the night, was a phrase used by an old friend I saw for the first time in a ages…”you’re looking really well”…said with gusto; said the way you would say to someone who has everything they need in life and more; said almost with the pretend affectation of envy; said the way you would congratulate someone who has won the lottery. How ironic that, beneath what generated the comment, being the appearance of such wellness, there was so much that I was having to hold together with tape just to be there…the core issue with invisible illnesses in a nutshell!

Really this factor of going through so MUCH, of living in such pain and struggle and no one ever sees it, except those you share a house with and even they have to take so much on faith; struggles so invisible that people sometimes even think they see the opposite, as in that you appear to them to be radiant with health, is like some sort of cruelly devised torture as it cuts those that need recognition and support off from the very resources that ought to be their’s. This is because nobody seems able to take illness seriously unless it presents in some physical form. Even the GP I’m due to see soon, much like all the others I have ever seen, will look at me with that same cynical, somewhat disbelieving facial expression I have grown use to and it will be all down to me to convince them there is anything wrong, and heaven help me if I happen to look “really well” that day!

I know I know, it’s just something people say to each other, I shouldn’t allow it to fuel a bout of rejection sensitivity and she only meant it well. Why would she see beyond the surface, given I was all smiles and probably seemed much like any other bright and breezy person she had caught up with that morning. However she also knew, from something I shared on instagram recently, that I’ve been going through this really awful, raw, quite serious dip in my health very recently, which she commented on at the time, so I guess I had secretly hoped for signs of a reality check this time she saw me. Lately, I’ve reached a point of just wanting…no, needing…everyone in my life to get up to speed with the realities of my health situation and to indicate that they believe me, they accept me, that they no longer cringe or squirm from the unknown areas of health that I represent and really see me as I am, perhaps even honour my resilience and courage and exhaustion and, without need for anything too elaborate, hold a steadying hand out to me at last. My family have come along hugely since my recent health scare and I guess I was now hoping my friends would do likewise, not just make small talk as usual.

I also guess, and no judgement meant, my friend assumes I am “better now” but the thing is, with chronic illness, you never really are! What’s more, how you look very often belies how you are feeling (this is exactly why they are so often called invisible illnesses) and then some, and that was presumably the case for me yesterday; I had just tried to present as “normal” too darned hard. Yet, like the serene swan whose legs have to paddle so furiously beneath the water, just standing there talking took such a lot out of me that my wearable heart monitor was registering extremely high stress and my hands, when my friend touched me, where noticeably sweaty, because of course you don’t want to ask for a chair when you’re in somebody’s work space in a bustle with other more-mobile people. What you really want to do is keep out of peoples way and apologise for any inconvenience if you slow things down; though, really, you shouldn’t be having to worry about this at all…and probably wouldn’t, if your disabilities were visible!

So, am I really hurt by the comment or mostly annoyed with myself for making seem so well? What I’m really saying is, it wasn’t just this fairly trivial one-off instance that got to me (if it was then I wouldn’t be writing this blog) but all the other ones that have happened over the years. All those innumerable little moments of not being seen as you are, of trying to make yourself small and inconspicuous, or not cause inconvenience, of craving compassion yet never seeming to attract any because you don’t flag up as having anything wrong with you start to build up over many years of invisible chronic illnesses. They happen mostly, of course, during those ever rarer times when you finally manage to catch up with friends because these are the very times when you push out all the stops to look reasonably OK and extra cheerful and (dare I say) normal because its how you muster sufficient confidence to be there at all. If I was to tip out of bed and head out the door looking the way I feel, I would never have the confidence to go through with it!

What I guess I keep really hoping for is that those who know me a little better, from years of friendship, will see beyond the surface (perhaps even scrutinise a little deeper because they really care) in order to notice just how much of an extra effort its taking from me to be there and then show me just an extra moment of compassion, even just a brief private moment of reality-check when they lock eyes or squeeze my hand as if to say, yes, they really see me and what I’m going through…just as I am and as hard as things have become. I need reassurance that they are not just friends with me because I don’t rock the boat by bringing my problems to the table but in spite of my heavy load and that I’m allowed to be real with them without fear of making things awkward between us (as topics such as having a health crisis can sometimes do). I need to know we are not just fair weather friends, as I certainly wouldn’t be to them. Sympathy is not the abhorrent sentiment it is sometimes made out to be by those who have easy access to it but something that can serve as a balm to the soul and I guess I have a long-term deficit.

Such a gesture would mean the absolute world to me because chronic illness is such a very lonely place. However, you’re dammed if you do and dammed if you don’t. Either you don’t do anything or see anybody because you can’t really cope any more or you put your best foot forwards and pull out every spoon in next week’s drawer to show up, but then people take it as a sign you are “better”, not that you are in the very midst of a gigantuan effort to rally all your strength, to be courageous and far more resilient than you are really capable of, because you really want to be there!

Yes, yesterday took a great deal out of me, but it was so worth it as just having a day of semi-normality, being bright and breezy, surrounded by art and flowers and carefree people was just the tonic I needed. So there is that factor too, as in, would I really want everyone to be patting me on the arm, offering a chair and looking at me with concerned eyes? The answer, of course, is no…but something in the middle would be far better, far more real and make me feel seen by other people, rather than as though I sent some sort of proxy-me out for the day, a sort of hologram of good health, whilst leaving “real” me with the chronic conditions lying at home on the sofa.

Its true, I still have a few friendships of old where the matter of my illness is still never brought up, or I bring it up and it feels awkward, like the elephant in the room, and it bothers me. Do they think I made the whole thing up or does it make them uncomfortable? I never can tell. All I know is that it erodes at my sense of them being true supportive friends because, unless they see me as I am, how can they pretend to really know me? All they are in relationship with, really, is a ghost version of me that predates all the things that have happened in my health; the version of me that they knew “before” (but then how many old friendships are anchored in the past, more so than the present, like that). Are they fair weather friends who only want to encourage me when I’m seeming OK but shut me down when I so much as hint a a health problem? You start to wonder that, of course (and I have certainly lost a few friends from overstating the reality of my conditions) but again it can leave you feeling very lonely in a lifetime where (and its a neurodverse thing) the only friendships that feel real to you are the entirely unguarded, unmasked and deep-running ones where you can talk about absolutely anything at all and safely be your absolute selves.

Of course I have one or two friends that come into that category and am so immeasurably grateful for them, and yes I’m still grateful for anyone who passes the time with me and helps to make me feel like a person, not a liability or a bore, for just a few moments, but that doesn’t always take away the sting of not being seen as I am.

I do, of course, appreciate its difficult for anyone who has not had an invisible illness to truly understand what they are, how much they affect every single detail of your life and how they differ, significantly, from the other kinds of illnesses where people rally around with gestures that come easily to them, being more run of the mill and safe turf. Someone ends up in bed with flu for a week and their friends and neighbours rally round with offers of shopping or looking after the kids but when you have an ongoing condition (or two) and they just seem to drag on, year after year after year, with precious little visible clue that there’s pain or disability at the surface, most people are wrong-footed in their attempts to help, not knowing where to start, so they avoid. I’ve noticed a slight increase in relatability since some people have been able to say “oh I have a friend who has long-covid and s/he really struggles”, which has brought the realm of the chronic illness somewhat more into the focal point of people’s experience lately, but not everyone has yet had that experience and illnesses like ours are still fairly “fringe”, hard though that is to imagine to those of us, and our families, who have to live with them day after day.

The problem, of course, isn’t only to do with how you are perceived by your friends and neighbours but is something that can have a massive impact on whether you ever get to receive any help or accommodations when you need them in a more practical sense. Whether you are at the theatre, a restaurant or in a shop needing that bit of extra help or understanding, perhaps more patience when you can’t be rushed, or a seat when you are feeling dizzy or discombobulated, having an invisible disability can mean you are left floundering or totally misunderstood, even abused for your shortcomings, whereas someone in a wheelchair gets all the help they need.

With some relief over this, I came across a scheme recently called the sunflower symbol for hidden disabilities which offers a range of ways of flagging up that you have invisible disabilities using ID cards that you can carry, stickers, badges and so on, and now recognised by a whole range of businesses (though not nearly enough yet) meaning their staff should be trained to be helpful when they see the sunflower symbol being displayed. I ordered my set of cards and stickers very recently (a general ID card with all my disabilities and a standalone POTs card in case I am suffering from orthostatic intolerance when I’m out and about) but have yet to try using them. Interestingly, I came across someone else displaying the sunflower symbol just yesterday, which was a reassuring sign that its getting out there. This young woman was one of the two people checking people into a venue that we went to, only she was sitting down whereas the other volunteer was standing and I had already clocked that she was different in subtle ways that I could relate to since they remind me of myself. Sure enough, I noticed she was displaying the yellow sunflower on her collar and I made sure to give her an extra big smile though she wasn’t the one checking me in. Here’s hoping the sunflower symbol gains more widespread recognition soon and that, via this scheme, more people start to become aware that invisible illnesses exists and are out there, probably far more widely distributed than they think.

I guess I don’t always make it easy for myself. A whole lifetime of becoming expert at masking (as a neurodiverse woman who only ever wanted to fit in) has made me equally expert at looking “fine” when I’m really not. I also don’t have the same range of facial expressions that other people have. Mostly, my face is switched “off” to a very high degree (something I no longer fight against or apologise for as its part of my autism to have a largely expressionless face, even when I’m really enjoying myself) so my only other setting is extreme emotion, be that extreme distress or a big big smile, both of which have been learned as the socially appropriate way to engage with others. Yesterday, I was in smiling mode because I wanted to feel part of the happy vibe on the trail and to show I was available to make conversation. How can you smile that broadly when you’re in a lot of pain? I have no idea, but I can and perhaps part of it is because, for me, its like putting on a certain outfit to fit the occasion.

This ability to smile so much also means I tend to get off on a better footing with new people (as in, they aren’t instantly put off me, by the blank set of my face!) but this also means that they don’t get to see the whole picture of me, which can again hit me even harder after the event because it hurts to think that what they interacted with was only surface deep. Once you’ve set this precedent, it’s incredibly hard to go back and risk being more authentic next time because what if you then ruin what you started?

We happened to make friends with a group of 4 people at the next table when we stopped to have a drink yesterday and had THE best chat I’ve had with anyone for months and months and no exaggeration…sad but true…whereas these were such jolly people that I imagine its all in a days work for them to laugh and vibe off with other people as they were doing. Whatever it was, we just clicked with each other and ended up talking for probably way over an hour, getting quite personal with each other, laughing a lot and sharing stories. For me, it was tremendous, a real event, something quite special, to hit it off so much that they called us back into their conversation after we had supposedly said our goodbyes, we even talked about keeping in touch. However, for all this wonderful flowering of intimacy, no clue whatsoever was given that I had chronic health issues so now I feel like the fraud. I even ended up standing for far too long at the end (for far longer than I should have or was really capable of) and am now paying the price for it, but some part of me wouldn’t make myself conspicuous or rude by dragging up a chair to their table without being asked. In short, I thew in a few extra spoons…and now my cutlery draw is pretty much out of them for the rest of today, with the hope I will find some more pretty quickly as we have another busy day planned tomorrow.

This is how setting the wrong benchmarks at the start of a relationship can have adverse affects on chronic health and lead to avoidance when, really, more honesty about health limitations should lead to more understanding and being able to self-advocate (for things like sitting down, taking a break, postponing) and therefore the ability to see each other more often. Fear of the consequences of being so honest is one of the prime reasons I have become so isolated due to chronic health and it sounds fairly typical of other people I have spoken to; but it shouldn’t be that way. There should be no need for awkwardness, embarrassment or apology when it comes to admitting you have invisible conditions and, really, this greater preparedness to come out about it is what it will take for it to become more widely known about and, in time, understood.

So, its a topic that feels worth airing as (without really having any conclusion) I do feel we long-haulers deserve to honour the sadness and “unseenness” of our invisibility. The way human society is devised, the very foundation stones of its connectivity networks, is based on us all having relatable, sharable situations and people being able to recognise when another person is in strife. When you have chronic conditions that not only isolate you from other people due to an equally chronic lack of spoons, also causing you to be misunderstood by other people (as people tend to assume you are making up lame excuses when they can’t see the energy deficits you are having to work with!) then having the additional pitfall of nobody being able to recognise that you are ill, even when you finally come out of the woodwork, is the final sting in the tail. As it stands, people tend to rely far too heavily on how things “seem”, based on which they make a whole lot of assumptions; they assume they know what they need to know based on sight only, which is a faulty premise. In essence, they have to learn to check in with you however you happen to be “looking” on the surface, and also how to take you on faith, and this requirement puts a friendship though it’s paces (not every friendship will survive it). Any friendship worth its salt, however, should be able to stand up to the test.

There’s a broader lesson in all of this; maybe its time we all checked in with each other more and stopped just assuming we know enough at the surface level, or that everyone is pretty much the same. Chronic illness, like neurdoversity, defies all our old assumptions and puts us all to the test; how much are we prepared to relearn what we think we know, however new, unusual or challenging it may be (having chronic illnesses has certainly taught me to question this, repeatedly) and can we allow that people are hugely diverse, that we can’t always know what they are dealing with by comparison with ourselves. In some sort of conclusion, this is a topic that needs far more exposure than it currently has so that the utter reliance on “seems like” is finally ditched in favour of people feeling like they can let it be known, without any fear of stigma, that they have unseen causes of struggle and then receive the social, logistical and emotional supports and inclusions that they deserve.

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