For Freedom's Sake

I thought it was time for something a little upbeat.

I’ve just come back from a trip to London – yes, I hear you gasp! Me, a Northerner born and bred surviving our glorious capital! Whod’ve thought eh?

This was quite an undertaking for me. I’m by no means at the more severe end of the spectrum with my Fibromyalgia but I’m still presented with challenges. This was the first time I’d done any extensive travelling, dealt with the Tube (my own personal vision of Hell) and a lively gig environment since the condition really sank its teeth in for good and all. I say this for comparative purposes as I presented with symptoms up to two years before diagnosis, but the last six months or so pre-diagnosis were certainly noticeably worse and I’ve remained at much this level since. In short, the trip to London was a prospect accompanied by a potent brew of both terror and excitement.

Why were we taking the risk? Because my favourite band – Austrian power metallers Serenity – were in the UK again, and there’s something of an unspoken promise between the partner in crime and myself that each time they make the trip over we go find them. In short, my inner rabid fan girl was firmly in charge.

Travel was pretty uneventful, so things started well. I’m of a mind to curl up with a book on long trips, and a cup of tea and something to eat at the changeover from coach to train at East Midlands Parkway was enough to see me through, Steven Erikson’s The Crippled God in hand, to London.

Now, the Tube. Why you ask is it my personal vision of Hell? I can appreciate it’s a brilliant transport system and infinitely preferable to the public transport alternatives in place, but it terrifies me nonetheless. We’ve fallen reasonably unlucky in that we’ve often traversed London at peak times in the past so that hasn’t helped. My problem is the complete lack of respect for personal space. Yes, I know it’s logical to get as many people on as possible and I know everyone has somewhere to be – coming from a much smaller city in t’North the pace of London is a little unnerving – but it’s a problem for me with my hypersensitivity. With observation this seems to be triggered by the feeling I can’t move freely – so the more packed the carriage, the more agitated I’ll become.

As the Imperial War Museum is currently shut until the summer for renovation, we decided on the Natural History Museum which I’d never been to before. We walked around for a good five hours and still missed plenty – it certainly needs multiple visits to see and appreciate everything. For me, that’s a big undertaking in itself in terms of activity and thankfully I coped fairly well, although I was in need of a snooze by the time we reached our hotel. I implore anyone who hasn’t been to seize the opportunity should it arise to go – it’s fantastic. 

(Yes, I love Dippy too.)

A minor episode of hyperventilating and general distress resulted from the Tube ride from hotel to venue. Through jostling about I ended up backed into a corner on a busy carriage and couldn’t escape the feeling of being almost-stood-on. I wasn’t even properly bumped into at any point – but every brush past sent agony up my back and through my legs. Not an auspicious start to the evening to be sure.

I got off incredibly lucky with the gig, for which I’m more than thankful having had to leave the last one I ventured to early due to pain and general acting up (Sabaton last November). We found a spot with reasonable space half way back, and someone kindly offered me the spot in front of them so I could see better (sometimes being 5’3” offers small victories – even sympathetic ones count!) so by about half way through proceedings I was two people back from the front but still with plenty of space. I threw caution somewhat to the wind and thoroughly enjoyed myself. Post gig my neck and legs liked me not at all, and they liked me even less when I woke up this morning.

I’ve spent today being unusually sleepy – that means just one thing. Petunia’s taken note of this excess of fun and activity and is going to make me pay.

This brings me around to the point of this post. What constitutes throwing caution to the wind for each of us will differ – different conditions promote different challenges, and all the degrees of severity add to the discrepancy of experiences across the chronically ill community. My point is not to show off how much I managed to do, or the bemoan the fact I knowingly put myself in the position for a pretty inescapable flare up and backlash.

My point is that there are some things that are too important to miss, some situations which cannot be lightly thrown aside to avoid pain further down the road.

Sometimes, kicking the rule book is for a good cause.

Chronic illnesses are so easy to be overwhelmed by, because by their very nature they are incurable and cannot be escaped. We all hope for a cure in our lifetimes, but at the moment it’s a faint and far off possibility in most cases. It really is a very easy thing to “become” your illness, and to let it take over your life.

I don’t think any of us realistically expect to live the life we did when we were healthy. Nobody expects to not have new considerations to think of and to have to plan more carefully. The reality is that tough decisions will have to be made for the good of one’s health, and some of them could be very upsetting indeed.

Personally I know I live in a very careful manner presently, far more so than I ever did before contracting Fibromyalgia and IC. I religiously exercise even when all I want to do is crawl back to bed (I’ve given myself tomorrow off – it’s a gift, so it’s OK!) and I have to plan weeks and months into the future in terms of events which fall close together. Overdoing it is a harsh and often incredibly painful and distressing lesson , certainly not one to be oft repeated.

This is my way of fighting back. Taking the chance for the things I love even though I know the consequences. We all have certain things that enrich our lives and we wouldn't be the people we are without them. Every person has something which stirs their emotions – and there is nothing at all wrong in that. It’s something to embrace and enjoy, not to be ashamed of.

I know that either tomorrow or the day after, I’ll be in agony. I will not be able to leave the flat and I’ll find even the most trivial of tasks difficult. However I’ll find all my warm clothes, don the heat therapy gloves, surgically attach myself to the kettle and settle under a duvet for the day with a book and my cat. I won’t enjoy it, but it’ll be all right in the end.

I willingly accept this – because in my own way I’ve taken yet another step towards victory. This is my method of preventing my succumbing to despair, of stopping the conditions and their limitations from taking over my life. I couldn't fight it every day, so I store up rare occasions like this one.

The things you love are too important to not fight for them in whatever way possible. Some things will be impossible and have to be given up entirely – I’ve made a post about giving up skiing and horse riding, things I miss dreadfully and always hoped to return to. Some others however sit that fine line between being that little bit too much and being just about acceptable on a good day.  

Various people have sent me some truly lovely messages about finding this blog inspiring - if you take nothing else away, I want to give this one idea to you: take the chance.

Whatever your illness does, however much you hate it, call it names and rail against it, it is not who you are. It is not the sole definition of you or your life - merely another facet making up the unique person you are. We all occasionally have to take the plunge for something we love to reinforce that fact. 

You are strong. You can do it.

In closing, I'll just say that Serenity are my favourite band. They aren’t on our shores very often, but it means that each time they are here will be one of my hoarded and precious rare occasions.  This time was the first and proves it possible. I’ve done it once, so I can do it again.

I kicked the rule book and fought the good fight. Most importantly though, I loved every minute.

(Answers on a post card as to which of us is happiest - with Clémentine Delauney and Georg Neurhauser of Serenity)

Winter is coming

(anyoneforanya.blogspot.com)

(And sticking around for far too long this year might I add.)

The weather. If you’re like me and you’re British it’s probably a popular subject of grumpiness and moaning on an everyday basis. However, finding myself paying particular attention to it wasn’t something I expected to be a part of being chronically ill. The only conclusion I can come to is that I’m clearly a Stark* – I know when winter is coming.

Actually, hot and sunny weather isn't the cure-all you might think it is either. Extremes of temperature at either end cause problems for Fibromyalgia sufferers, but I'll stay consistent with the time of year for now and cover the effects of warmer weather when it finally arrives.

I’ve reached the point where I can wake up in a morning, tentatively flex limbs and know instantly if it is raining outside without looking, purely from the particular quality of pain and aching. I do a remarkable impression of my Dad despite not sharing his rheumatoid arthritis.

Fibromyalgia: a more accurate prediction for rain than a field full of cows lying down. Fabulous - I’m a walking superstition.

November onward last year and so far this year has being particularly challenging, but then again it is my first winter with the Fibromyalgia having set in properly. Since moving up to York I’ve tried to go out on every dry day even if only for a quick walk just to get some fresh air, and it took me a long time to realise that my sudden sharp spike in fatigue was due to the cold. I walk fairly briskly and because of that I didn’t feel the below zero temperatures so much. Petunia definitely did, however. I found an annoying tendency to have to sit down and have a warm drink at some point during a short trip to town, purely because I was too sore and tired to make it there and back in one go.

For someone who has been incredibly active all her life, this is incredibly galling.

 Dry cold I can just about combat. Thermal base layers are a must and reasonably inexpensive to procure, thick socks (multiple pairs works just as well) and I never go out without gloves any more. Even if I don’t end up using them, it’s not worth risking a few days of my hands being crippled just for the need of having brought them out with me. I can mostly cope with snow providing it’s a crisp and cold sort of a day and not the kind mixed with damp and rain that usually occurs here in Britain. We can’t even get snow right most of the time for goodness sake.

Wet and damp weather however renders me fairly useless. Clearly I was born in the wrong part of the world, as the UK has quite a talent for wet weather.

I can still go out if I really have to, but I pay for it for at least the rest of the day if not the next as well. Damp weather outside means no matter what I wear or how many blankets or duvets I get curled up under, I cannot get warm inside. 

Usually my Fibro pain, whilst always present, moves around a little and concentrates on the same areas – shoulders, hips and hands are my particular hot spots. When it’s wet, it’s EVERYWHERE. I can only describe it as the sensation of pain deep down into your very skeleton, and every movement creates a spike. I also start to stiffen up very quickly and have to keep having a wander up and down the flat to loosen my shoulders and hips off. I’m replaying an old RPG called Baldur’s Gate II at the moment so I don’t appreciate such interruption – the mind flayers will get me if I leave!

Yes I could press pause, but I tend to forget that. A lot.

I haven’t really found any effective way of combating this beyond having hot baths as often as I’m able, so if anyone has any suggestions I’d be most grateful to hear them. I’ve tried heat pads in the past for an old back injury and I never found they worked too well. The heat is a nice sensation, but not very effective beyond that. I took some of these pads with me to a festival last year in the hope of gaining some relief from my tired (and very painful) shoulders – it was too hot and sunny for the pad to be comfortable and my shoulders remained obstinately achey, so it would be fair to call this one of my less successful attempts.

My one main source of comfort is to do some form of exercise indoors to warm up, and to take general mothering advice of making sure to have hot meals when it’s cold out. I’ve found Pilates to be my particular go to, although I appreciate that might not be right for everyone. However, being able to do some form of gentle exercise just as close to a warm radiator as possible definitely has appeal.

And if all else fails? Get settled under a duvet and grab a hot water bottle - or the cat.**

*I’m not up for having my head cut off, before anyone makes a wise crack. I may be from Sheffield, but I’m not Sean Bean .

**My cat does not necessarily always care for this suggestion. 

But you don't really care for music, do you?

(Have you any idea how nigh on impossible it is to find a non vomit-inducing friendship picture? I gave up. have a dog with an odd choice of headwear instead.)

And so I come round to yet another particularly difficult post. Channelling and yet at the same time making something constructive out  of anger and pain is an interesting experience for me, so I ask some indulgence if this entry is not quite so elegant as usual.

I’m going to take a less-than-wild stab in the dark that every one of my fellow Spoonies reading this has lost “friends” in the journey from onset to diagnosis and beyond.

Why am I using quotation marks? I’ve come to accept I’m a little harsh in my views on this (I’m a product of my experiences, as are we all) but to my way of thinking anyone who will let you go over something like illness was never a friend to begin with - not in the truest sense of the term.

I was often told growing up that if you could count true friends on the fingers of one hand, you were doing something right and could count yourself immeasurably blessed. However I don’t think that stops it being painful when people either disappoint or turn out to be different from the person they’ve led you to believe they are.

My social circles have come to be almost unrecognisable in comparison to before falling ill, both in negative and positive ways. Some people I wasn’t close to and shared merely a passing acquaintance with have stepped to the fore and become true companions – I’ve made two friendships throughout this process in particular which have the flavour of the lifetime about them, and I wouldn’t swap that gain for anything on this earth.

However, I have definitely lost people who I previously thought belonged there.

In chewing some of this over, it came to me that those who can’t cope with something like a chronic illness aren’t necessarily bad people. After all, everyone has something that they are just unable to cope with, something that remains ineffably incomprehensible to them. Some people just cannot deal with sickness when it isn’t transient, and I don’t think they should really be judged for that any more than anyone else for their particular quirk. For some people, compassion for the same problem after more than a couple of weeks just isn’t natural. They tire of asking the same questions when they will receive the same answers.

In some ways I can actually understand the predicament. For the first six months or so I flailed about completely unable to deal with what was happening to my body. I drew inwards, I lashed out and if I’m brutally honest I wasn’t coping well at all. Acceptance comes to us all in time however, and part of what helps us reach that is having friends who close about us and offer a quiet word, some of their time or sometimes even a shoulder to cry on.  

At my absolute lowest (towards the end of last year) I was in a very dark place indeed. Diagnosis seemed all but impossible and disaster was striking elsewhere within my family. If you believe the old adage that these things come in threes, my falling ill was but the first and by far the least of the three.  I am not by nature someone who reaches out very often, but I started to try then. I’d reached a point where coping by myself wasn’t working, and I (like many before me I expect) reached to some of the wrong people.

What I received in return was cruelty and bile from unexpected quarters, and those wrong people showing their true colours in backing the abuser. Accusing me of enjoying being ill because people pitied me, of making the most of the opportunity for attention and attacking every which way I had sought to make sense of my new normal was considered by them to be “just giving advice”. The fact the “advice” came with a plea to not respond and to not reveal the abuser’s identity or tell anyone else about the message seemed lost on them. It was not lost on me, however.

Why am I mentioning that example? Well, I’ve seen it happen to too many other people to not at least offer empathy from similarity. More importantly though, using unavoidable ill-health as an attack makes you the lowest of the low in my eyes – I will never, ever change that view. How cowardly, and how truly pathetic.

The anonymity plea counted on my being too hurt to do anything in response. It didn’t count on my much more forthright and rather angry partner stepping to the fore and making sure it didn’t go unanswered. Fireworks ensued, more true colours were shown in further unexpected quarters, and I set about the business of healing the damage and rebuilding the way I thought about the bigger picture of my situation.

In short, the quotation marks I used above suddenly became permanent fixtures in my way of thinking.

What nobody had counted on (including me) was my mentality and previously unplumbed depths of resilience. Kick me when I’m down in the right spot, and you unleash my seldom-seen temper. I didn’t direct it at anyone, but instead used it as fuel to pick myself up and carry on with renewed vitality. I made myself a nuisance with the NHS, fought tooth and nail with them for every inch of the path to knowledge and as a result received my long-awaited diagnoses. I re-assessed my situation and took some very large and frightening steps in the name of my long term health – most notably, I left my job and relocated to live with my partner without the promise of work, something the me of two years ago could never have imagined doing. Making the decisions was liberating in itself – I firmly believe decision making to be good for the soul.

Importantly though, I made rather large changes to my social circle. It sounds like a minor element, but for someone who is as non-confrontational by nature as I am it demanded some real soul-searching and courage.

I removed everyone who wasn’t helping me. I cut loose every last person who had brought me down or made me feel bad for having my illness, and I rid myself of every single toxic relationship I had subconsciously tried to hang on to.

Diagnosis opened my life up again, and I wasn’t going to waste the opportunity to make it a better environment for me to cope within. The difference once rid of all the toxicity was truly amazing.

I really do urge people (ill or not) to let go of any toxic people in their lives. It’s a good life lesson in general, but it makes a tremendous amount of difference. As a sufferer of chronic illness of any kind you have quite enough to deal with without worrying about the troublesome opinions of people who don’t take the time to understand. I’m probably sounding more than a little harsh – but ridding yourself of people who are unhelpful or damaging isn’t something to be ashamed of. I came across a very nice quote to this effect recently:

You don’t ever have to feel guilty about removing toxic people from your life. It doesn’t matter whether someone is a relative, romantic interest, employer, childhood friend, or a new acquaintance — you don’t have to make room for people who cause you pain or make you feel small. It’s one thing if a person owns up to their behavior and makes an effort to change. But if a person disregards your feelings, ignores your boundaries, and continues to treat you in a harmful way, they need to go.

-          Daniel Koepke

Most importantly, in one way or another the abuse was what started me on the road to eventually creating The Retired Bridgeburner and putting together my small attempts to help others with some humour and honesty about my experiences. I am beyond words in trying to capture how pleased and honoured I am by the nature of the response to this blog so far.

My overall health is now improving in as much as it can for having that much healthier environment about me. I have found my own particular brand of quiet courage and used the find to build some self belief. I’m discovering new limits and I am in many ways a wholly different person from the healthy me of two years ago, and whilst I have railed at some parts of the process I regret the changes not at all. I entered a somewhat painful chrysalis and emerged a deceptively strong Fibromite butterfly. 

In mentioning the negative, I must of course shout from the rooftops about the positives. I used the phrase “immeasurably blessed” further up, and I apply that in every sense to my own situation. I have an incredibly patient and understanding partner who looks after me (and buys me cake – what a winner!) and I have some  truly fantastic friends, both ill and healthy, who make the entire process so much easier to bear. I was extremely lucky in that throughout the hospital process and numerous procedures I had people to turn to who had experience of the same and they were good enough to offer their time and reassurance. We have some bowel issues in our family so I had a very refreshing (if somewhat earthy) take on these things with which to deal with it all. A little bit of toilet humour can be surprisingly helpful!

However, most important in all of this has been those incredible friends. Their understanding, compassion and patience is utterly invaluable and I could never find the words to thank them enough. You all know who you are anyway.

I appreciate however not everyone has the luxury of understanding companions. To them I would say if I could climb out of the dark place I was in and find strength to cope, so can you. We all have depths of resilience, and we’re all strong. What else can you be when your body demands so much of you? You can do it. I promise.

The fact remains that in this game between me and Petunia, there’s only going to be one eventual winner.

It ain’t you, sweetheart. 

Wide Eyed Stupid

Wide Eyed Stupid - someone doing something incredibly daft.

(Nerd points for me - I finally worked Malazan into a post title.)

So today I thought I would talk about some of the peripheral effects of Fibromyalgia. Most people are aware of the pain, tenderness and general fatigue. As I found out slowly over time there are actually a lot of other symptoms and oddities associated with the condition. These are just the ones that cause me problems – they’re by no means the full story.

The title? Well, the peripheral symptoms do just about amount to the body (or more specifically the brain) doing incredibly daft things. A nerdy reference which manages to be fitting too? Fancy that. 

This was probably the hardest post to write so far in this blog, as even though I know this all happens on an almost daily basis to me at some point or another, it still reads as if I might be going slightly bonkers. I bit the bullet and got it all down though, if only in the hope it shows other people they're not going crazy, these are genuine symptoms and it's all really happening. 

Brain Fog

I’ve covered this in my previous post here . It’s not enjoyable and can be frightening, but I always try to laugh afterwards. There is something more than a little amusing about picking up your car keys and forgetting what they’re for. Somewhat funnier is when the example in question is my car keys and they’re attached to a moving bright yellow model of Bumblebee the Transformer. You’d think they’d be easy to recall wouldn’t you?

An addition I forgot to mention in my previous post on the Fog - does anybody else struggle with mixing up or just plain being unable to remember simple words? This actually upsets me a lot, and has driven me to stop talking in company until I calm down again on occasion. As someone highly intelligent with a love of vocabulary and the English language I find this to probably be the most distressing cognitive issue I face. I'd take forgetting what the keys are for over this any day given the choice.

Sound

One problem on the increase in recent months for me is sound sensitivity – my passing inability to filter out irrelevant noise is starting to get noticeably worse. This is most apparent with frankly the oddest of things. My partner was watching Peep Show on Youtube the other night in the study whilst I was on my computer (opposite side of a smallish room) and every time a new character started talking it physically made me jump, even though I could hear every word said in the mean time. Any change in volume caused a rattling-around-inside sensation all over me. Not cool, body. I do find I often have to ask the partner to turn things down if it gets a bit too much.

This rattling about sensation is the best way I can describe my usual reaction with sound sensitivity. I don’t actually think it’s to do with volume most of the time – it’s the pitch and tone of a sound. I know it’s not volume because I’m fine at loud heavy metal gigs (with earplugs*, that is) Some voices are fine at any volume – others irritate straight away. The “rattling about” is swiftly followed by the muscles of my neck and shoulders tightening up (something akin to coiling a spring, or that’s how I visualise the sensation) and the sound becomes more and more of a problem the longer I can hear it. 

As you can imagine, the tightening up is painful, and the longer it goes on the more painful it becomes. It feels almost as if “fight or flight” has gone into overdrive and you're constantly waiting for something to react to, even though you aren’t consciously trying to do so. I suppose this is to do with the lack of filtering I mentioned. Frankly, it’s a bit tiring.

Oh, and a sudden noise I’m not expecting? Think the same process about one hundred times as fast. Ick.

One theory I have kept an eye on in recent months has been the theory of Central Sensitisation. It’s shown rather neatly in this diagram below:

(I found this on Tumblr without a source. If anyone knows where it comes from, please let me know and I'll add it in!)

If we follow the idea of areas of the brain being overly “switched on” and constantly trying to assimilate and process information, then all those sensory overload problems start to make a kind of sense.  Or at least in my head it makes a sort of sense. 

Smells

Smells are funny.  When I’m in pain I constantly pick up a pervasive “wrong” smell. I don’t know what it is – I doubt it’s anything in actual proximity to me and probably just a bodily reaction – but still, it’s an oddity. Given we’re currently drying out our bathroom and half the kitchen from a bathroom leak, it’s hard to tell what’s the damp and what’s the funny pain smell. 

Dizziness/poor balance

My general clumsiness and ability to overbalance at the slightest provocation have never really been in question (graceful or elegant, I am not!) but it’s certainly something I’ve noticed worsen with the Fibromyalgia. The best description I can give is to compare it to almost constantly *just* overdoing it – so being that tiny bit over balanced or stopping a tiny bit too late. It really is a very small measure of mistake, but it’s happening most of the time. I await general chaos and hilarity when I strap on the high heels for the wedding of some friends this weekend.  The shoes are pretty – see, I have my defence of possible broken ankles all set already.

Blank moments

I’m unsure if these little blips are a part of the Fog or not. It’s like staring into middle distance all of a sudden waiting for your brain to kick back in. I’ve no control over them, they’re a little bit frightening and they seem to come paired with the onset of all over sensations of “heavy” limbs and increased aching. It hurts, it’s not pleasant and I have an utter inability to do anything until it passes – except sit down as fast as possible as I tend to go dizzy as well. I've baffled two consultants with this so far, so I’m looking for my hat trick!

Bowel habits

I'll admit to this being a somewhat sketchy inclusion. I'm currently back to diarising food and bowel habits again and I'm waiting to find work again so I can pay for some specific food testings which were recommended to me some time back (if anyone wants the link to have a look at, let me know and I'll find it for you). I'm aware Fibromyalgia can disrupt bowel behaviour and it's tempting to put it down to that, but something doesn't quite sit. My old Gastro consultant pretty much dismissed the idea of IBS - and I'm still pretty convinced he was correct, I don't seem to fit the pattern. However, it's something I think needs to be looked into further. Does anybody suffer with bowel changes and wouldn't mind telling me a bit about them? It'd be interesting to see if it correlates in any way. 

I'm aware Fibro can affect bladder function to, but given that I was diagnosed with IC I think my issues stem from there.

So yes, that's some of my little oddities. Does anybody else suffer from these, or different ones?

*The earplugs I have are ER20s, They are relatively inexpensive on Amazon and I can't recommend them highly enough. 

Here lies Edmund Blackadder, and he's bloody annoyed

(Courtesy of SMBC-Comics.com)

I’m sure anyone who frequents the realms of the internet will have encountered the above illustrated “Mount Stupid”. The silly little hill where those who know very little about the topic at hand sit and attempt to drown out everyone else with their non-knowledge.

I will admit, this is where all thoughts of serenity and calm go out of the window for me. I don’t like people who play the know-it-all in any walk of life, because I see a distinct difference between being knowledgeable and using it in a helpful manner (generally when asked), and being knowledgeable (or not) and using it to try to look better than other people.

My body is not a plaything for your game of superiority.

If the collective brains of medical science don’t know all that much (comparitively speaking) about Fibromyalgia, how ludicrous is it for someone to skim read a Wikipedia article, do a quick Google search or indeed just parrot whatever they’ve heard second hand to think they will know better?

In short, how dare you assume you know more than me about my own illness?

There are of course differing degrees of this ignorance. I’m sure I’m not the only one to be accused of making it all up, of lying. I can’t even begin to comprehend this – why on earth would anyone *want* to be unwell? The usual answer offered is to gain the sympathy and attention of others, but speaking as a sufferer of chronic illness sympathy is the last thing I want. Understanding yes, pity and sympathy no. Sympathy just highlights the problem – I know it’s there, I’d rather not draw any further attention to the fact my life is different from before.  

When I fell ill I was at first misdiagnosed with Irritable Bowel Syndrome. Knowing little about it and not being entirely trustful of the results of your average Google search, I asked for advice from others on a public forum where I had seen the condition mentioned previously. A user asked what it was (I’d typed “IBS” rather than the full name) and immediately several people waded in with their opinions – and yes, most of them were indeed residents of Mount Stupid. Whilst saying “it’s just a bit of diarrhea or constipation” isn’t strictly a lie, it barely skims the surface of what is actually a much more complex problem than “just” that. Others jumped straight in with “it’s not serious” – and while it doesn’t do any actual damage to the body in the way that for example an inflammatory bowel disease would, it can have a profound effect on quality of life.

Lesson learned – don’t ask for wider opinions in so open a fashion, you’ll invite more ignorance than you will helpful advice.  

An example probably more widely seen by most is the subject of depression. Everyone has an opinion on the “myth” of what antidepressants do or don’t do. Every Tom, Dick and Harry (who are usually notable only for the fact they are not and have never been sufferers of depression) suddenly know exactly what actual sufferers should and shouldn’t do. In short, all the residents of Mount Stupid are suddenly mental health specialists.

Fibromyalgia has its own specific set of misconceptions, as do all poorly understood conditions. Some of my favourites are below.

“Doctors say it’s not even a real condition, just a bunch of symptoms.”

Gee, thank you. Whilst this is indeed one theory (research continues), for the moment there is a recognised condition with the name Fibromyalgia with a legitimate set of diagnostic criteria which have to be met. How do I know? Why, because I was put through the tests for the criteria by a doctor who then used the results to diagnose me. And no, I don’t want to have the pressure point test ever again. It hurt.   

“You can’t be in pain *all* the time, that’s ridiculous”

Can’t I? Please resend the memo confirming this prohibition, my body clearly missed it. I do understand that permanent fluctuating levels of pain are a difficult concept to comprehend for someone who has only experienced the transient finite pain we’re all accustomed to, but I can assure anyone reading this that it is indeed a very real phenomenon.

“You don’t look sick.” 

My all time favourite. There are many memes around on the internet offering various answers to this question, ranging from the brilliantly sassy to the downright rude, but my personal preference (purely for humour value) is below

Now, I’m not suggesting it’s a lie. On a simplistic level it’s perfectly true – we generally don’t look sick. However, do these people ever stop and think about why many of these things are called “invisible” illnesses? Shockingly, it’s not just a clever name.

In summary, I might have days where I hate what my body is doing right down to the depths of my soul, but it’s still my illness and my body. It’s not yours. It’s not happening to you, and without actual experience of the same thing it is very difficult to truly understand the problem.

What most chronically ill folks who have their heads screwed on the right way would want is that you at least make the attempt to understand – and you accept what we have to say.

If all you do is spout the little you think you know, then you prove your own ignorance and more disturbingly you prove your foremost desire is to turn the situation or conversation into being centred on you. You prove your own lack of compassion.

Our doctors often don’t know the things we need them to – so you, a random bypasser in our story, certainly don’t.

And to finish, a humorous tip. Whether it’s a chronic illness, a topic of news, or a banal discussion of the weather, the following is never going to be a clever answer: