Living with syndromes

I want to talk a little bit about what it can be like living with syndromes, by which I mean any of the following (and I’m sure I’ve missed some out but these are my experiences): fibromyalgia syndrome, chronic fatigue syndrome, ehlers danlos syndrome or hypermobility syndrome, central sensitivity syndrome, mast cell activation syndrome and postoral orthostatic tachycardia syndrome.

Without going into detail about what these syndromes are as I feel sure anyone reading this probably has fair idea or can explore the rest of my blog, they all share some things in common from the subjective viewpoint of having them, including how very difficult they can be to explain to other people (not helped by a scarcity of information via “mainstream” channels). One of the biggest is how they make you feel relative to the rest of the world and that’s what I want to briefly talk about in this post.

For instance, we are visiting my husband’s family later this month and they have been prewarned that I am having issues with some of these syndromes so, in a sense, this is our first visit where they have been vetted. Until now, we have tried to protect them from knowing much about my health and that in itself is one of the hardships that people living with them face…as in, do I try to explain my condition to other people, potentially worrying them and probably meeting a wall of noncompute when I try to explain what the symptoms are, or do I simply pretend I am fine, which gets harder and harder to carry off as your condition gets worse, adding to your hardships. If you have, in a sense, spent your whole life trying to seem like you are coping when you are not (as per the classic experience of neurodiversity as a woman…and for studies relating to the emerging link between autism or ADHD and chronic illnesses, see my last post) this only feels like it rubs more salt into the wound.

Given the sizeable flare-up I am now having, topic of my last couple of posts, I am getting increasingly anxious about certain aspects of this forthcoming trip and these are things I could do without having to additionally worry about on top of the hardships of travel themselves when I am not well, which are considerable given how much I am always adversely affected by long journeys. However, inevitably, there are going to be demands made of me to show up and to socialise and, most specifically, to “eat out” while we are there…two little words that can set off tremors of panic to anyone with MCAS or indeed any of the syndromes that respond adversely to eating “the wrong food” (which, whether you yet realise this, is in fact all of them since diet minutely affects everything in our health, especially when you have these syndromy kind of conditions). One wrong ingredient tucked away and you can find yourself in the midst of a major flare-up of pain and other symptoms just when you are least able to handle having one.

Because of all this, when we go off visiting, we try to take the reins of where we will eat-out, which then also takes a load off the people we are visiting as well. Weeks in advance, we ruled out the pub we went to on our last visit to the area which, though it professed to have a gluten free menu, caused me to have one of the most severe food reactions I can ever recall and which took the remaining three days of last year’s trip to recover from, it was quite awful and I still don’t really know what it was that “did it”. This time, I have spoken to the staff at yet another pub and isolated what I can and cannot eat, so (with no small amount of fuss…since they seemed to struggle to grasp that plant based meant no cheese and continued to send me options containing gluten until I told them there were literally no options on their list that I could eat; they then confirmed a meal option they could offer, only to initially tell me it couldn’t be served at lunchtime when we are booked-in) it finally looks as though they might be able to put a meal together for me without too much risk, as long as they remember to take out a couple of the ingredients. By the way, the world might have got better at offering plant based and gluten free options but they very seldom coincide, which excludes those like me from just chosing something off the menu like a “normal” person before we even step through the door (restaurant owners please take note, of course their are vegans who are just as intolerant of gluten as many meat eaters so please include us).

There is always a “wing and a prayer” feeling when you have to negotiate a special meal with a venue like this and you have to hope that a lack of understanding at the conversation side of things doesn’t translate into a lack of understanding in the kitchen on the day. At times when I’m not feeling too bad, I will take more risks than when I am, with mixed effects, somewhat like playing roulette, and even the most optimistic outlook and positive mood can’t save me from a reaction if a reaction is going to happen. Quite a few times this summer, I have done alright eating out and its been such a relief to feel less waryness about doing such a “normal” thing.

However, that was before I had this major flare-up, where I am barely able to eat much at home without dire consequences, let alone in a pub! Now, I am in a state of deepest trepidation about the meal in question and, if it was any other party of people, I would opt to eat something at home and just join them for a drink (of water); I really don’t mind and its preferable to making myself sick for days. Beth O’Hara of Mastcell 360 website talks of marching into restaurants with her pre-prepared meal wrapped in foil and asking them to put it on a plate but I’m not sure I have the balls for that in front of my inlaws, though sitting there without a meal in front of me (as I last did at a different family reunion a year ago) is also a nerve-racking thing when you know people are drawing conclusions about you and giving you “looks”.

So, knowing that these particular family members really don’t get my particular health conditions based on comments I have heard fills me with almost as much trepidation as eating the meal but then why would they know anything about them, having never really heard of them before; they sound so bewildering and they really are (as I know only too well); impossible to describe to anyone else how detrimental one wrong meal can be when your body flares-up into a major POTs or pain reaction at the merest provocation. The only issue here is, what is the best thing to do about the meal…for me…and, to be honest, I still haven’t decided. Maybe I am worrying about nothing, nobody will bat an eyelid if I opt not to join in the meal…but my track record of these kinds of situations isn’t encouraging or filling me with confidence.

“Why don’t you insist your doctor does something…get some pills…get your head scanned…find a consultant” are typical responses from those who don’t understand syndromes. They don’t know, without you regaling them with a very long-winded yarn, that you have probably spent years and years being dismissed by doctors, sent all around the houses, misdiagnosed, fobbed-off and generally treated like a hypochondriac by most of the mainstream medical services. That you have got to wherever it is you have got to by learning about your own syndromy body and doing all your own research, talking to those who (like you) are invested in finding answers because they also live with syndromes (example being Beth O’Hara who has lived with mast cell activation syndrome for years and offers probably the best online resource on the topic). What they particularly don’t seem to get is that your condition is chronic, by its very nature it just goes on and on and that means there is no quick fix!

With my family, having taken more time to drip-feed them information over the years (though it really wasn’t easy in the beginning and I still suspect there are mutterings behind my back when I allude to my health) it has got somewhat easier. We visited some of my family a couple of weeks ago and my sister took no umbrage at all that I deigned to eat from her buffet and brought one or two snacks of my own to tide me over; I wasn’t there for the food but for the company and she has got to the stage where she preempts my concerns by saying “please don’t worry about the food or anything else, just come and do what you need to do, lie down if you need to…its you we want to see”. If only it was that easy with everyone!

When we eat out ourselves, perhaps because the sort of restaurants we frequent have more of a “clean food” mentality being plant based (and not the junk food end of that spectrum) we have an easier time of it; also because I vet them well in advance and then tend to stick to places we have used before.

We visited an award-winning vegan restaurant a couple of weeks ago for the very first time, which can be a nerve-wracking thing normally but I could tell straightaway that I was on solid ground from their eager and informative responses to my questions by email. When we got there, they swept us upstairs to where the couple at the next table also had “quirky” food requirements and were extremely well-looked after by a brilliant young woman who took her time to check every dish on their taster menu with me; she even brought out handfuls of drinks so I could check the small print on their ingredient lists (I decided to opt for water…way too many words ending in “ose” for me to take the gamble!) and even tweaked certain dishes so I could join in as far as possible.

Unfortunately, this culture of treating food respectfully and as a primary constituent of healthy living, as though it is either “medicine” or “poison” (it really is!) isn’t so strong in none plant-based locations and especially in pubs where the mentality is to feed the masses as much food as quickly, cheaply and efficiently as possible. In such an environment, I come across as “fussy” and they would rather I didn’t go there as I am a dead loss to deal with. The trouble is, most people think of eating out and they suggest a pub because it’s the easy way to feed a big family group and to, supposedly, please everybody; how weird it seems to them that you hold a contrary opinion!

The label of fussiness is one you come to dread when you have syndromes and its not all about the food. When you are prone to sudden waves of quite inexplicable exhaustion or low blood pressure, when exercise intolerance can come over you from nowhere though you looked just fine yesterday, when you decide to sit out meals at the last moment, not just because you daren’t risk the ingredients but because you are getting a migraine or feeling overstimulated, when you need to elevate your legs to counter sudden blood pooling or lounge into a corner, ask for more pillows when others are happy to sit around in hard chairs at the table and chew the cud for hours, when you won’t even raise one glass of alcohol to toast a happy event, then people inevitably think you are being fussy or a drama queen. They have no real concept that, though last time you met you were joining in at a wedding celebration, its also possible that on some days you really struggle to shower yourself, wear normal clothing or sit up to eat your meal, that even the touch of certain fabrics can sometimes hurt and you just need to sleep half the day, in fact you can hardly get your thoughts in order enough to string two lines of conversation together due to extreme fatigue and brain fog when you’re like that.

It’s also very hard for them to grasp that you just basically need more recovery time, rest and repose than the average person though you ‘seem’ like everyone else. Criticism (even implied) cuts you to the quick but you can’t just buck yourself up and pretend you’re ok like you are just coping with a cold. They don’t realise that you spend a lot of your time trying not to feel broken or like a waste of space, a burden to those you love or even doubting the logic of your own conditions, so having that reflected back at you in the eyes of others is heartbreaking and can wreck what is left of your morale and confidence. The very thing that you really need, being kindness and compassion, can be so hard to come by in the world of syndromes.

Worse (and this may be a case of just a little bit of paranoia creeping in but its hardly surprising after years of eye rolls and furtive glances around the room at the merest mention of your health quirks) you fear that they think you are not only fussy or exagerating your symptoms but attention seeking. Which is so ironic really given the very last thing you want to do (believe me!) is draw attention to yourself; in fact you hate being singled out and would do almost anything to be the same as everyone else, to be able to say yes to “normal” things and for everything to be straightforward and easy in these social situations which you already find so hard in many ways.

The sadness and the loneliness that can stem from the inevitable rejection sensitivity that grows out of having syndromes can be one of its worst factors. Not only do you feel dismissed and rejected by much of the medical quarter but you also feel as though you are not taken seriously by so many of the people you deal with in your personal life, many of whom really matter to you, so their opinion of you likewise matters, thus it really hurts to realise they don’t understand you or what you are going through. If you don’t tell them what’s going on, they inevitably misunderstand your motivations when you seem to let them down or do things differently because of your health but if you try to explain even a small portion of what its like to have syndromes so that you can try to make things work out for you both whenever you get together, you can sound a little “extra” and you frequently sense you have lost their good opinion because your quirky needs sound so weird and contrary. Why are you making things so complicated, they are probably thinking.

Why do you need to fuss so about the seating in the restaurant or how loud its going to be, why would you rather they didn’t keep their phone on the table unless they switch it off first, how on earth can clothes “hurt you” meaning you don’t want to put on party clothes if you can help it, and why can’t you commit to something and definitely turn up, why can you drive your car one day but the next day you are having dizzy spells like a swooning Victorian in a play and have to cancel? You look perfectly OK to them (the curse of the invisible illness) and the other day you were doing that thing with everyone else, with apparently no problem at all, so how can you possibly say you are barely able to walk today, that you can’t pull your weight doing errands or go on that outing? It always feels like you are shirking your role, as a friend, a helper, a normal person.

I should add, its not just family or friends that struggle to grasp syndromes and I’m more than used to receiving a blank or even cold, dismissive response when I’ve had to ask for accomodations from people in places we have stayed or on the end of a telephone line and mentioned why. For instance, in circumstances when, had I said I had some other illness such as cancer or a visible back injury they would have rushed to make exceptions or help me but the mere mention of fibromyalgia or chronic fatigue, for instance, can result in a suddenly frosty tone and a removal of eye contact that suggests “that’s not a real condition” (this has happened more than once lately). Yes, health discrimination is still alive and well and there seems to be some sort of invisible hierarchy of conditions (not in any way based on how much suffering a condition causes!) in which the aforementioned syndromes feature somewhere close to the very bottom…or fall off the list altogether!

If I paint a very bleak picture then I want to add that, of course, the most understanding of friends and family will try very hard to understand, even though they can’t really know what it feels like to be you, but it can certainly seem easier not to spread yourself too wide socially as the odds of understanding get worse the more people you mix with. Given you probably have very little energy to expend being social and your confidence is probably also really low, thus your feelings quite liable to get hurt, the effort that it entails to go through the early assessment period…does this person want to really know what I am dealing with, can I be honest with them or will I get dismissed if I mention my condition…feels rather too much to take on most of the time. As for family, especially the older generations for whom seeing a doctor and taking a pill is the answer to everything, they may never really understand what you are going through and the only peace comes from accepting that…and doing what you need to do for yourself anyway, because trying to conform to expectations to please anyone else has too high a price. The very last thing you need is something else to worry about on top of your load!

Perhaps there is personal growth in all of this, in fact I am sure there really is, though it can really hurt at the time. Learning who takes you seriously, and who takes what you say at face value without suspecting other agendas or needing writen proof from a doctor, can be a useful exercise in identifying true friendships worth investing in. Learning to have compassion for yourself, and to advocate for your own needs come what may, even when those around you have drawn distorted or downright false conclusions, can bring great amounts of inner clarity and strength, hard-won though it is. You learn unconditional love for yourself and your own life and, in so doing, you become far better at offering unconditional love to everyone else, even those who don’t know what its like to be you, who don’t even seem to have the merest curiosity to try to understand in some cases, and probably never will.

The gift in this is learning not to hold this lack of understanding against anyone but, rather, coming to realise they couldn’t possibly know how it is for you unless they were able to experience it for themselves, and you wouldn’t wish that on anyone. Taking your energy out of the time-waster activity that is wondering what other people think of you gathers more energy to give back to yourself and you need to claw back all the energy you can when you have these syndromes. Its not selfishness so much as learning to drop your anchor at the very core of your own experience, from which place you become the most centred version of yourself that you can be, and you need that with syndromes; it will hold you steady whenever the seas get rough, and they will.

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