author / blogger


3 Feels A Day

In my long and varied 'career' as a professional patient, I've held many beliefs on how I should and shouldn't respond to developments or setbacks in my health or treatment. I've tried to follow the rules laid out for me in supposedly inspirational quotes, telling me to look on the bright side, and that a ‘negative attitude leads to negative results’. I’ve tried to find a good balance when things go wrong; tempering my disappointment with the inevitable reminder that it could be worse, that is has been worse, or that I’m ‘lucky’ I’m not in a more difficult situation.

I’ve tried to remind myself when times get hard, that I’ve dealt with a lot already in my sickly ‘career’, and that, as always, I’ll deal with whatever the next disaster is when it comes with aplomb. But to paraphrase Ronan Keating, despite knowing that life with chronic illness is a rollercoaster, with all the ups and downs and occasional vomiting and sporadic screaming associated with it, whether I’m prepared or not, I’ll still find it difficult when my symptoms worsen, or I’m diagnosed with something else, or when I suffer a set-back in my treatment.

I’ve internally berated myself for not being tougher, more hardened to these eventualities, which only serves to make me feel I’m not being a ‘good enough’ patient. I’m just not trying hard enough, I’m weak, I’m lying down to my illness. In truth lying down is SO GREAT, so I can be forgiven for allowing myself that one.

But the reality is, when I find myself feeling I’ve gone back to square (minus) one with my condition, I’m permitted to feel bad about it. It doesn’t mean I’ve given up, or that I’m not trying hard enough to be ‘positive’. It just means I have human emotions and real feelings and find it too exhausting to pretend otherwise. Masking our pain only serves as detrimental to our mental health.

We are constantly told to be ‘strong’, and ‘toughen up’, but when we experience chronic illness we spend so much of our days just attempting to remain upright, that it’s exhausting forcing ourselves to slip into neon lycra and hop in the ring for another round. There is no belt, no trophy, no prize for getting through each day when you live with a chronic condition. There is no justification for smiling through it either – no reason for us to ‘toughen up’ – we are already as tough as we can possibly be, we just might not feel like it most of the time.

Pain is not ‘negativity’. Our response to our condition and the fallout of it should be our own and isn’t up for discussion. Each of us will respond to changes in our illness as they occur in our own way, and that might not always involve a smile. The idea of positivity being key to recovery can be just as toxic as we perceive negativity to be. Forcing ourselves to paint on a smile when we are in deep pain is illogical and damaging. We should allow ourselves the space to work through our feelings without fear of being judged. Telling us to ‘chin up’ is for the benefit of others – those around us can be uncomfortable dealing with us when we are feeling bleak, its easier to encourage us to cheer up instead of allowing us the room to be blue for a spell. Don’t force positivity on those of us who maybe don’t always feel like it – and if you are in pain, don’t beat yourself up for feeling.

Feeling can be healing.

(Trademarking that for an inspirational quote poster as we speak so BACK OFF).

Kathleen NichollsComment
How Low Can You Go?

I don't mean to brag, but a doctor once called me "a medical conundrum".

*flicks hair, flounces off*

This and many more, are the types of comments you might begin to take as compliments when you live with a chronic illness. Or maybe i'm just severely lacking in Self Esteem as well as Vitamin D? That's the subject of todays blog - the level at which our 'bar' can fall when we live with a chronic condition.

We all have a 'bar' - a level at which we will tolerate certain attitudes and behviours. Most of us like to think that bar is high; ("i want to do good and put kindness and love back into the world!"), but many of us have a decidedly lower bar; ("hear me out though, the Nazis had a lot of good ideas.."). We mostly try to live in accordance with our 'bar' - within the peramiters of what we deem acceptable and unacceptable, and what wider society has deemed unacceptable. Many of these 'bars' don't run in tandem with others; with some people it can feel we are playing a decidedly more difficult version of Limbo, where it keeps getting lower and we keep trying to keep up rather than tell them you don't want to play anymore and your lower back ACTUALLY REALLY HURTS OK.

Maybe that anaology doesnt work, you'll be the judge, but i suppose i'm just implying that everyones' idea of 'tolerable' is different - that depends on so many factors I dont have the time or pain relief to go into right now, but these tolerances can often ebb and flow with our own personal circumstances.

If we are a banker, born into excessive wealth, we might step over a homeless man without thought, for example. If we have known how it feels to have been in difficult circumstances, we might be more inclined to buy him a sandwich, perhaps. Kindness and empathy don't depend on our bank balance of course, but our upbringing and circumstances often have a huge bearing on what bar we set for ourselves.

If you live with a lifelong chronic or mental illness, (maybe you're even lucky enough to have both!), you will from time to time feel you should tolerate certain behaviours, or perhaps that you deserve to 'settle' in some aspects of your life due to your condition. You will set your sickly bar low. It's not what you should do of course, and I'm categorically not advising it, but you probably will. This often stems from feelings of growing isolation. The more time we spend sad, sore, alone with only our own (mostly negative) thoughts, the more chance of our self esteem and self worth dipping lower than a cheese fiend at a fondue party.

With an unpredictable and chronic condition, plans often have to altered or even cancelled at the last minute. We may have to leave events early, reschedule to suit hospital appointments and procedures, or advise that we are simply not well enough to do x, y or a. Or any of the rest of the alphabet for that matter. We often feel misunderstood and just too tired to explain what we feel or need.

But none of that means we should accept anything less than complete and transparent equality within all of our relationships.

Staying in situations we are uncomfortable with because we feel we should be 'lucky' just to have that job we hate, that friendship that leaves us feeling drained, or that relationship we know is toxic, is counterproductive and just plain silly. Wasting our precious time on discomfort is illogical. We already deal with so much pain and unhappiness within ourselves - why should we allow anyone to treat us lesser than, simply because this life has been foisted upon us? We didnt choose our illness, so why should we allow ourselves to be penalised for it?

Chronic illness is just an aspect of a patients' life. One facet of the whole diamond, which can at times admittidely feel overwhelming and all-consuming. In those moments we can break our backs trying to reach the bar others have set for us because we feel it's all that we deserve.

But our bar should always be high enough to confidently strut under.

We deserve the same emapthy, opportunities, love and kindness as any 'able-bodied' person; it's important to try and remember that whenever we start to feel our self-worth take a dip.

Essentially though, i'm just far too top-heavy to win a limbo contest, but we all have our reasons for raising the bar.

Kathleen NichollsComment
I (Won't) Try To Fix You

As someone who has lived with chronic illness for over a decade now, something I'm commonly asked is how to 'approach' someone like myself.
Not physically approach, because yuk, personal space, and germs, you know? But more how to broach the subject of an illness, how to gain information without offending or embarrassing, and how to help soothe someone's pain.

People who I barely know, acquaintances, people online who have had a friend or loved one recently diagnosed, and the people in my own life who love me, all ask me these questions. And they are questions I never quite know how to answer. I suppose that's because we don't suddenly become part of some sort of sickly cult when we are diagnosed with a condition; we are still individuals, who respond to change in our lives in our own unique and complex ways. There is no one-fits-all with an incurable illness.

I also often feel unqualified to give a responsible answer to these questions. My own experience of chronic illness is far from linear, there have been more ups and downs in my 'journey' than a defunct mattress.

I feel angry and afraid a lot of the time.

I often don't know what to do with those feelings, so like my ungainly bosoms in an old bra they often spill out at the most inopportune moments. I'll find myself sporadically bursting into tears, feeling sorry for myself, then beating myself up mentally for being so feeble. All the while knowing I'm far from it; but like our physical strength we need to keep training our brains to ensure our heads are healthy too. This is easier said than done.

Chronic illness doesn't follow any rules. It pulls the rug from under you when you least expect it. Like that old timey pull-away-the-table-cloth trick, where the dinner service is still miraculously standing but wondering where the hell the ground just went from beneath it. I'm that dinner service. Shiny and a little wobbly on the outside but mainly confused and feeling untethered to everything around me. Most of us are.

I suppose, as I do with friends and loved ones of mine who are also sick, we want to 'fix' it all. Or at least offer comfort in some way. We all have our own ways of offering this comfort, but the most enduring and reassuring is often just leaving us with a feeling of security that you are 'there' even when maybe you can't be sitting at the metaphorical dinner table with us.

No one can 'fix' someone else's pain, however it manifests itself. But we can be loving, and patient with one another. Life can so often seem impossible. Often just knowing we are seen and understood is enough of a comfort. Stand with us in our pain, don't try to fix it, you'll only end up feeling like a failure when you can't. That just starts another cycle of pain that no one wants or needs.

Patients don't expect miracles from those around us; so much of our catastrophising is done inside our own heads that it's often too exhausting, and frankly unnecessary to audibly replay it. So don't assume we don't want to share; we're often just too drained to go over it again. Simply stand with us (or preferably sit) while we ebb and flow with our illness.

You don't even have to adjust the wobbly butter dish on our dinner table; maybe we've just adapted to it being that way. Give us time, and be patient while we learn to live with an ever changing version of reality. Hold a space for us in your heart and your lives, we so desperately want to fill it.

Kathleen NichollsComment
Pharma Police

Recently I went to collect a prescription at my local pharmacy.

This was my regular prescription for my migraines; the only medication that touches them. I have these migraines at least once a week, often for several days at a time and despite trying multiple relief methods (drugs drugs DRUGS, massage, heat pads, cold pads, getting my daith pierced..) nothing but this medication helps to minimise the pain. I only tell you this as a caveat to explain how vital this particular prescription is for me – it enables me to have some quality of life.

At this visit to the pharmacy I also wanted to put in a new prescription for a painkiller I've been prescribed for some new scary symptoms I've been having that I'm struggling to manage. When I visited the pharmacy on this particular occasion I was completely out of my migraine meds (the pharmacy had accidentally wiped my repeat prescriptions and rather than simply correct their mistake, I had to go back to my doctor to ask him to re-prescribe me the medication I was already prescribed for). This in itself is a big source of anxiety – knowing I don't have the medication I need when I need it is very frightening for someone who relies heavily on it. So, when I asked to pick up the prescription the pharmacy had text to tell me to collect, I was advised the pharmacist is on her lunch-break and I'd have to come back in an hour. Confusing enough as generally I don't have to see the pharmacist simply to collect something, but I wasn't in the mood to argue.

I then advised I wanted to put in a script for my new painkiller the Dr had prescribed. I was advised it wasn't in stock and wouldn't be in stock for another month at least. (!!!) I asked what could be done about that? Would I have to visit another pharmacy? Would I have to go back to my doctor? I was advised the pharmacy assistant “..could try and get it from a different supplier, but you look fine so why waste my time” (I repeat: !!!)

Needless to say I complained, after several hours of attempting to close my jaw which had fallen to the floor upon verbal impact.

I generally hate complaining about anything, but on this occasion I made an exception. Not because I want anyone to lose their job, or get a proverbial slap on the wrists (although a slap on the face was my primary desire in the moment), but because I don't want anyone else to experience the burning shame and humiliation that woman caused me for no apparent reason. Laziness? Weary after dealing with rude customers? Personality of a wet dish-cloth? Either way it doesn't matter why she spoke to me in that way; she shouldn't have.

It's important to remember that for many people visiting a pharmacy is just another anxiety filled off-shoot of visiting a doctor or the hospital. These are the people who supply often life-altering medication to vulnerable, often desperate patients.

Don't get me wrong, I know the general public are generally VILE. I've worked face to face, phone to phone, keyboard to keyboard with them most of my life; they are a living nightmare. Mostly. But if your job is to work with them, your responsibility is to maintain a professional attitude. Your job is to bite your tongue and grit your teeth and do whatever else is necessary inside your mouth cavity to ensure you treat them with respect – even if it sometimes feels they don't deserve it.

I did, and do deserve it, because all I wanted was medication I had been prescribed and require to help me live a 'normal' life.

The point of this rambly story I suppose is to remind patients that there should be no shame in requesting medication that allows you to function/feel better/*stay alive* – its as vital to us as water and air and Nutella.

For pharmacists or anyone who works alongside patients; please remember that even if we 'look fine' to you, we are face to face with you because we need you to facilitate the part of our lives that makes us look fine. I shouldn't need to waltz into the pharmacy in a hospital gown attached to a drip for you to 'approve' of me taking medication. You know nothing of my situation – only you do – you know that a Dr has advised I need medication to keep me alive. You are in a privileged position of having the ability to help make someone feel better – don't forgo that to make our lives more painful.

Also do not underestimate the tenacity of someone who lives with chronic pain. We are programmed to survive! How do you think we manage to look so 'fine' when we feel like death?

Kathleen NichollsComment
F▪R▪I▪E▪N▪D▪S - The One with The Chronic Illness

Since I became ill, almost a decade ago, I've struggled with how to best communicate my symptoms and experiences to doctors, colleagues, bosses, acquaintances, and even those i'm closest with. In fact the most difficult conversations have been with my family and friends; not because i feel i can't confide in them, but because confiding in them opens up wounds, instils worries and fears in them that i don't want to impart on anyone, least of all those i love.

The trouble with this is that withholding information from certain areas of my life only makes it more complicated. When i act like some sort of film classification board; deciding what health information is 12A certified and who can tolerate the +18 content, i only stunt my own ability to feel full love and support in certain places. Acting like i have the right to decide what someone else can 'handle' is not essentially my choice to make.

The most challenging part of adapting to this has been in my relationships with my friends. Since my diagnosis, I've found friends gradually dissipate from my life. I've felt like i'm standing on the edge of a shore watching them slowly slip into the ocean and theirs little to nothing i can do to pull them back. This is something I've struggled to comprehend as when someone causes you pain or hurt, the first response is often to blame yourself. So when I've lost friends I've immediately blamed my illness and my lack of being a 'good friend' on it. I've told myself its my fault because i'm not 'present' enough in their lives, or 'fun' enough anymore. But what I've had to learn, the hard way is that i shoudln’t have to feel pressure to be either of those things.

Friendship, like any good relationship is built on communication, equal compromise, and a love of high quality emoji usage. For me to assume that because I've had a major life change that often limits my ability to do certain things, that its natural people will no longer want to be around me; is incredibly upsetting and just plain inaccurate. Friendships should weather the good and bad, the break-ups and the babies, the new jobs and the new homes, all of life’s rich tapestry, short lived joining of tapestry classes; you get the general idea. So when one half of that friendship encounters a BIG BAD THING(™) in their life, the other half should be the solid pier to stand on while the waves are crashing, not the person floating off into the distance on the HMS F-YOU.

For anyone who is very invested in their relationships, and in trying to be the best friend they can be, there will always be moments where you will feel let down. Not everyone is going to love you the way that you love. That can be a hard pill to swallow, and believe me; I've swallowed a lot of pills.

Much of moving past the pain of a friendship-based rejection comes from acceptance of who you are and who your friends are. With growing older comes changes in everyone’s life, nothing will ever stay the same as it was when you were 10 or even 20. But valued friends on both sides will attempt to put themselves as far into their friends shoes as they can. Good friends will even borrow those shoes AND give them back within a reasonable time frame.

I can't expect my friends to feel what i feel. Their experiences can't match mine, as mine theirs. But we can empathise with one another, listen, attempt to understand. There is essentially no right or wrong: if a friend can't cope with having an 'ill' friend, or doesn’t feel any value in the friendship any longer, then its best for both parties to sail off into their own proverbial sunset. Pushing for love and understanding where it can't be found is painful and when living with illness, this is simply an added upset that we don't need. No one does.

Despite what every 'inspirational quote' from here to the end of the rainbow might suggest, chronic illness does impact our ability to do certain things and perform certain activities. It can limit our time socialising, or force us to cancel plans at the last minute. All of which i know must be infuriating for our friends. But if we can communicate comfortably and fully with one another on what we want and need then we should be able to reach a point of mutual compromise. Much like the one i have with my partner where i ask him to put the toilet seat down and he compromises by 'forgetting'.

There is always a place of compromise with the right people. Those who love you and want to be in your life will always understand. We can keep one another afloat. Even when it feels like one of us is being brutally mauled by a killer shark. And with that, i throw this analogy directly into the ocean where it belongs. x

P.S. High fives and bosom-y hugs to all my choppy and still-water friends: i love you more than all the fish in the ocean and i'm sorry for continuing this analogy long after i promised to throw it into the ocean. x

Body Talk

My body is many things; a form of transportation, a clothes horse, a hardcore hug dealer. My body also tries to kill me on a semi-regular basis. My body is an unpredictable yet alluring villain I love to hate. It lures me in with its promise of looking distinctly average in denim, then swiftly dashes my hopes by bloating to within an inch of itself leaving me feeling and looking like a beach stranded whale. It betrays me. Over and over again.

My body is a disabled body. It might appear 'normal' on the outside but it's really just a cleverly constructed meat suit that contains diabolical nonsense on the inside. I dont often think of my body as being disabled; it can walk and dance and perform extremely under-par in yoga class. But inside its failing me. It's sneaky. It scares me.

My disabled body can surprise and impress me with what it can withstand. Intense, searing pain, crippling and consistent discomfort, extreme exhaustion. It often takes all of those and more in its stride. (Or in it's slightly inebriated-looking stumble, might a more accurate description).
It tolerates so much and leaves itself so little. Running on less than empty energy reserves, allowing itself to be pushed into things it really shouldn't be doing. It still stands. (Ok mainly sits, but who am i to judge me).
These are the times when I'm proudly and secretly impressed by my body. Despite the pain and chronic symptoms it withstands it feels strong, and powerful. I feel unbeatable, invincible, even when horizontal and in a hospital gown.

But then there are times I feel like my body is a precious glass artefact. One wrong move and it will shatter into a million pieces, the gallery alarm will go off and I'll be billed for upwards of a million yen. My head never feels more separate from my body in these moments.

I'm often afraid of my own body.

Afraid of it letting me down, disappointing me, embarrassing me. I know we are all in it together; head, heart, lungs, excellent rack and the rest, but my body often feels like a separate entity. It has a personality all of it's own, and that personality is often unpredictable, unpleasant, pushy and borderline incoherent.
Trying to align my brain with my body is like attempting to corral a raging bull in the red pvc skirt section of Topshop. And believe me I've tried.

When your head wants one thing and your body is suddenly incapable of inacting it, things can get very strained very quickly. Relations between my brain and body are generally on a low simmer, ready to boil over at the first sniff of nausea, or a stumble, or a collapse. I get so angry at my body. I rage internally, and long for a new improved carcass that just DID WHAT I TOLD IT FOR ONCE. A car style trade-in, with maybe smaller airbags too, while we're at it).

But like it or not, this is the body I'm stuck with. Despite it being an absolute nightmare most of the time, I am responsible for looking after it. It might frighten me, but the unknown always does. And that's just it; I dont know what it's going to do from one minute to the next. That loss of control over something essentially only I can steer, is terrifying.

But like the best relationships, a little unpredictability can be fun I suppose? So maybe i just accept that i might not always get to fully able to decide what my body does and doesn't do and make peace with that? Loosen up a bit. Which with a bowel disease might not be the best turn of phrase come to think of it...

Golden Syrup

I've been thinking a lot about death lately. To be honest I think about death quite a bit most of the time, since I’m obsessed with reading about true crime, I frequently walk home alone, and am semi-regularly advised the on myriad of ways in which my various illnesses might kill me.

One of my childhood friends died suddenly last year and it knocked me for six.

She was the other half of me for the majority of my childhood and teenage years and we would hysterically laugh, argue like cat and dog, send S.W.A.L.K-heavy platonic love-letters to one another, and talk for hours about the future and what it would entail (babies for her, marriage to David Bowie for me). We were inseparable for so much of our lives, that the idea that she was suddenly no longer in the world anymore was excruciating.

OK so maybe I was never going to be able to marry David Bowie (RIP my sweet love), but she still had all the time in the world to produce cute babies with hair the colour of golden syrup! Suddenly she didn't. And I was faced with the realisation that people my age, people I’ve hugged, people I love; can be taken away from me in an instant. I know and have always known, that life is short. I just felt it crushingly unfair that it was her life being shortened.

I have grieved for my friend and I think I always will to a certain extent. I think we are always grieving for those we loved and lost because they have left a hole that we can't simply fill with some cheap emotional grout. It's a hole that widens from time to time; on anniversaries, birthdays, or when we are reminded of a song they loved or a thing they used to say.

I understand grief. Loss. I also understand that grief doesn’t have to be defined solely by death.

I grieve for my past life in a similar way; the life I lived before my diagnosis and before my body was ravaged by illness. I grieve for an unlived future – the one I’d hoped to live before sickness took over. But as with the grief we feel for those we love, our grieving for our own perceived loss is a wound which opens and closes over time. Mine has all but stitched itself back up entirely; only occasionally do I feel the pull of it, taking me back into a self-pitying spiral. But it passes. As all grief does. We can find something new from a loss. Strength, empathy, understanding.

I loved my friend and I miss the 'what might have been' for her. I miss it for me too, but I understand I am incredibly lucky. I don’t want to be selfish enough to grieve for a life I might have had when this one is already so full of heart-swelling love and laughter. I am lucky to be here to grieve for my friend, and for my 'old life' because I’m living a new one. Slightly modified, maybe a little harder than I would have liked, but maybe even better than the imagined one.

Sleep On It

We hear the word 'exhaustion' bandied around a lot. We are "exhausted" at the end of the working day, "exhausted" walking up a flight of stairs, we're "exhausted" listening to negative conversations or dealing with negative people for hours on end. Like so much of the language we use, it has become distorted over time; words that were once reserved for the most extreme feelings or situations are now commonplace in our day to day lives. 'Awesome', for example, was once intended for the sight of an incredible awe inspiring view, a breath-taking feat of human strength; now its an unthinking response to someone handing you a cup of tea. [Just for transparency, 'awesome' is not commonplace in my own vocabulary because I've never seen anything that impressive and I’m not a Teenage Mutant Ninja Turtle].

But being 'exhausted' isn't something to be proud of. It isn't something to be praised for either. It's a sign you have overworked, have pushed your body too hard. It's a physical reminder that you need to take care of yourself and SLOW. DOWN.

When we become so attuned to this feeling of exhaustion we often take it for granted. An unfortunate result of this can be that we may overlook issues which might actually be symptoms of a greater problem. Everything is just placed in the 'exhausted' folder.

I have a chronic illness so i feel exhausted most of each and every day. I don’t use that phrase lightly; i know the difference between feeling a little tired and feeling utterly exhausted. I know how it feels to feel ready for bed as soon as i wake. I know how hard i find it to literally keep my eyelids from drooping when the clock strikes midday. I know how it feels to have every available muscle in my body screaming out for respite at the end of another work day.

I don’t take massive issue with people using the word 'exhaustion' you understand; i am well aware language changes and adapts to the climate over time, that’s human nature. But my worry is how readily we use a word which implies a more worrying concern. Why are you exhausted? And more importantly why do you think its in some way impressive?

We can all strive to work hard, and to the best of our abilities without endangering our physical health. The need to work and work until we are nothing but empty husks is learned behaviour that can be changed by laying down some personal ground rules. Learn where your limitations lie and make peace with having them.

Despite what every 'motivational speaker' from here to kingdom come professes; we can't always do everything we set out to achieve. Thinking positive, rubbing crystals, praying to a higher power – whatever your weapon of choice might be, 'believing in yourself' isn't always enough. Aiming to meet your targets whatever they may be, personal or professional, might need modification from time to time, and that’s OK!

The importance of factoring in rest is vital. It's not a treat to be earned, only after running yourself into the ground; its as vital to life as water and air. The stronger you feel and clearer you are the more likely you are to work-up the goods to get what you are going for. Without feeling floored at the end of it. Exhaustion doesn't achieve anything but increased mattress sales.

Night Night xo

Eat it Up

“Let’s go out and grab something to eat!”

A phrase that fills so many of with a sense of giddy, tummy-rumblin’ joy, is a phrase that can fill the rest of us with a bubbling sense of anxious foreboding.

When you have digestive issues, eating can quickly become a pain rather than a pleasure.

I’m sure it comes as no surprise to hear that those of us with digestive diseases have a complicated relationship with food. This complex relationship displays itself in a variety of different ways. We don’t just fear the pain we will most likely experience after eating, we also fear the inevitable consequences of eating (i.e. rushing to the bathroom, extended traumatic bathroom ablutions, finding a nearby bathroom, OK look mainly all bathroom stuff but you get the point). We hate rapidly losing weight, we hate rapidly gaining weight, we are anxious about planning our meals, we stick to tried and tested snacks because we know (hope) they won’t ruin us. We wish we could get as excited about eating as everyone else does, but we have a novels’ worth of outside influences to think about before so much as nibbling on a piece of toast.

More recently, digestive illnesses have been linked to an existing eating disorder named ARFID (Avoidant/Restrictive Food Intake Disorder). ARFID is described as presenting ‘where the consumption of certain foods is limited based on the food’s appearance, smell, taste, texture, or a past negative experience with food”. As a result of this type of eating problem, we are often unable to take in adequate calories and nutrition through traditional means. We end up losing weight or are unable to gain it. We may need supplements to obtain adequate nutrition. The problem with this arises when we are unable to absorb any of this nutrition via tablets (or hamburgers); and we then require even more medical intervention. A vicious anxiety filled cycle begins where we can feel reliant on medical professionals, not only for monitoring of our care, but for assistance with something that should be one of the most natural parts of our everyday lives.

It stands to reason that prior to an official diagnosis of a bowel or other digestive disease doctors are often quick to hop on the eating disorder train. I’m my case, 4 separate doctors told me I had an eating disorder, despite my continued and confused protestations that I loved food; I just couldn’t bear the incredible pain I was in after as much as one bite. I’ve always been slender but by this point I’m sure my appearance was more striking than I recall. How I looked didn’t enter my head; imminent death did however, so I pushed and pushed until I was finally hospitalized, and a more definitive diagnosis could be found.

For so many of us, Food = Pain.

So why then would we want to ingest anything that would cause us so much discomfort? This can lead to us eating less, eating smaller and smaller portions, or simply not eating at all. For me, when I am in extreme pain and flaring badly, I often find myself falling into that dangerous pattern. I’ll feel nauseous and exhausted, I’ll have mild ‘PTSD’ from my last bad experience with food, and I’ll subsequently eat and drink only the absolute minimum to allow me to function. (Yes, I KNOW this is unhealthy and I absolutely DO NOT advise it; but I’m also sure many of my fellow bowel-based patients have similar experiences).

The problem is, so much of life revolves around food and drink. Our social lives are generally centred around eating and drinking as meeting points or starting places for a night out. Social events like weddings and birthday parties will always involve food and most definitely alcohol. We can’t simply hide ourselves away forever for fear of being handed an hors d’oeuvre.

Naturally, issues with food and around the amount we eat can lead to body image issues. Again, another reason why medical professionals may seek an initial eating disorder diagnosis. Our weight can fluctuate so often and so quickly that it can be hard to maintain any level of self-esteem. Of course, medication and treatment play a part in this, so it is generally an unavoidable problem. I’ve seen myself looking in the mirror and being pleased to be able to see my ribs. Losing weight is heading in the right direction isn’t it?! At least that’s what all the magazines and online influencers tell me!! Now pass me another aloe vera smoothie I want a clear view of my internal organs!! Of course, I don’t believe that skinny = good; but I once did. And I probably will again at some point in my life, much to my own internal voice screaming the opposite at me. It can be hard to understand when you look at this situation as an outsider; but if you’ve ever been on steroids and gained hamster cheeks virtually overnight you understand why our view on our own appearance can be somewhat skewed.

Nowadays I’m pleased if and when I put weight ON, which is a much healthier place to be, but I still struggle with the fear of losing it all the minute I flare. Weight with chronic illness can be like winning the lottery but constantly having a thief waiting around every corner ready to snatch it away from you. Often, I’m too unwell to eat, I can’t keep food down, I’m too afraid of the consequences, or I’m in too much pain to physically consume food, so when I manage to put weight on it feels like an achievement.

Food will always be a sticking point for those of us with digestive issues. We’ve had and will undoubtedly continue to have negative experiences linked to eating and drinking, so seeking help when we need it is always important. Eating disorders of all kinds require outside help; patients require help in learning new habits and methods in which to eat without fear. They require physiological help in understanding why we have adapted these behaviours and learn ways in which to control them so as to allow us to live full and HEALTHY lives. Life with chronic illness can be utterly exhausting and overwhelming, and sometimes we don’t feel we have the energy to change our behaviours, but for me standing still in how I manage my disease might as well be going backwards – I want to challenge myself to be the best ‘patient’ I can be, to be engaged in my own recovery, and establish how I can overcome my fears, be they eating a popcorn kernel or bungee jumping; I want 80 year old me to know 35 year old me pushed herself to live her life beyond her fear.

I want to dance while I’m healthy enough and well enough to hear the tune; I don’t want food to be my nemesis. Living in fear is no life at all and I’m not going to let a croissant beat me. What an embarrassing grave stone that would be for starters...  

Neigh Sayers

A few weeks ago a stranger messaged me on Instagram to send me abusive and frankly x-rated messages; the most coherent of which was that in his opinion I portray an "innacurate depiction of living with chronic illness". The man had a picture of his horse as his avatar so naturally I replied in a mature and succinct manner, by insulting his hooves and mane and saying I'll have him turned into glue. I'm 35.

Before it descended into horse-bashing and threats of making him into Lasagne, i did however query why he thought that i was somehow rose-tinting life with an incurable illness. He advised that i only post the "good times" and that i'm always "looking well" in my photos. Well first off, THANK-YOU for saying i look well! and also are you single? Secondly, if you think posting pictures of my scars from life-saving abdominal surgery, or my ribs showing from losing over a stone in a fortnigh, or me shakily holding the needle i'm about to pierce into my milky-white flesh are attractive, then please immediately Google the number of a qualified therapist in your area.

I disagree with this horse-man (Centaur?) for many reasons; but mainly because I am always concious of how what i show of my life might be portrayed. I am concious, for example, of not frightening recently diagnosed patients with graphic imagery that might terrify them. I know it did for me. I am concious of reminding people outwith chronic illness that a "good time" is generally swiftly followed by bed-based consequences. I am concious of showing the world that despite it often being difficult, i am able to do a lot of the things i want to do alongside my illness. I know i definately needed to hear that following my diagnosis.

When i am met with Centaurs like this one, berating me for what i should and shouldnt do, i feel disheratened. I consider what the point of it all is. Not in the philosophical sense i should clarify; i certainly wont be ending my life on the opinions of someone who cant even put their own 'lucky' shoes on by themselves. I simply mean i question what is the point of sharing my 'journey' (YUK) with the world is. And i suppose it comes back to the reason i wrote my book. (Go Your Crohn Way, available from all good book stores and apparently some stables..)

I write and i post silly and not so silly snapshots of my life because my life is not 'one thing'. I have chronic illnesses that greatly affect my life, but they are not all i am.

I know that when i was diagnosed, the absolute last thing i wanted to see was what a disease can do to someones physical and mental health. I wanted to see a light at the end of my colon. But instead i was met with all the myriad of ways in which my body would be decimated, the things i would no longer have the strength or physicality to do and the ways in which my life would change for the worse. I was repeatedly told by doctors that i would still be able to do x y and z, but their accompanying facial expressions said otherwise.

So when i adapted to my condition in my own way and began to dip my diasesed toes back into 'life' as i once knew it, i found it was all still there waiting for me. I found the love that my friends and family had for me was still there, and it was poured over me like glistening sugar-cubes (just trying to keep it relevant for my Centaur friend).

I found that although i'd often have to push through pain and doubt and fear to achieve the things i wanted to, that they were still attainable. All things i would have loved to have perhaps visual and written evidence of when i was at my lowest ebb. So you see, my glossy-maned friend, i portray life with chronic illness as i know it; because i live my life with chronic illness. Some of that is spent in bed and maybe one day some of it will be spent riding someone like you.

(FYI still on the horse analogy here: i am in a loving and committed long term relationship). x