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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

Build It And They Will Come

I've been consistently (and 'officially') ill, for well over a decade now. It's exhausting and frustrating. I'm regularly homesick for health. I miss the parts of my life where I didn't have to factor my health woes into my every day plans. Where I didn't have to drive myself bananas, thinking about what might or might not happen every minute of every day.

One of the things I've found the hardest to adapt to in being chronically ill is in allowing people around me to lighten my sickly load, and in establishing new boundaries around what I should and shouldn't expect from my relationships.

Expectations around what I want, and don’t want people to do for me can be tricky to overcome and even trickier to express out loud.

Boundaries are important to establish for those on both sides of a relationship with chronic illness in it. The ‘sick’ person needs to learn how to let people in, open up parts of their life they may not necessarily have been comfortable sharing otherwise, and allowing others to take some of the burden when we are at our worst. The friend, partner or family member of said ‘sick person’ in turn needs to learn when to intervene and when to allow us the space to adapt to our changing circumstances ourselves. Finding a balance on how a relationship changes when one party is a perma-patient is difficult but requires a little work on both sides to maintain an equilibrium. Expectations on both sides need to be actively managed.

Learning boundaries is important for everyone, not just those adapting and living with chronic illness. Many of the reasons why we don’t have them are instilled from an early age, some even deep-rooted childhood fears that we need to learn to work through. Not having boundaries permits people around us to do us harm, simply because we have become conditioned to fear conflict or the loss of a long-standing connection. 

For someone chronically ill some of the ways in which we violate our own boundaries might include;

-      Spending time with others to the point of physical/emotional exhaustion

-      Not letting others know our physical/emotional ‘limits’

-      Giving too much of ourselves without having our own needs reciprocated

-      Not making our own emotions/opinions a priority

Oftentimes when we are unwell even having others simply ‘visit’ us is exhausting. Feeling a pressure to ‘perform’ or be buoyant and cheerful when we feel at our worst can be overwhelming, and generally unapparent to those on the receiving end of our super-imposed sparkling wit. Agreeing to social events or following though on pre-arranged plans when ideally we should be lying horizontally under 15 blankets, is another way in which we dismiss boundaries for fear of upsetting others, or being socially ostracised.

We feel the more we say ‘No’ to, the less we’ll be asked. We will exert ourselves too much to appease others, we’ll eat things we shouldn’t so as not to cause a fuss, we’ll drink that extra drink we know we will pay for later just because someone bought it for us. We will negate our own needs and bulldoze through the boundaries we took so long to build up.

Learning to maintain boundaries and set them (with love) is a work in progress.

The main thing to remember is to start with appreciation and work from there. Be mindful of others’ reactions and continue to instil the idea that although you can’t/aren’t able/don’t want to do that thing, whatever it may be, that you are grateful to be considered regardless. Positive affirmation is central to this and reminding those you love how important they are to you goes a long way to softening the blow to a ‘no’. This all works both ways and learning to find a balance of workable boundaries is something that can be established between friends/partners/family over time.

The key is to start from a place of love and respect; anything that comes from that place can only blossom into something even more beautiful.

Turn and Face the Strange

I've lived with various chronic illnesses for well over a decade now. By my own calculations I've always been 'ill' to some degree, as far back as I can remember. I don’t recall a time I felt 'well'. My body has always felt somewhat 'other', not normal, (whatever that is). And not just because I looked like a gangly male ironing board for the majority of my childhood; but because I can't remember how it feels not to feel nauseous, or exhausted, or in pain.
Don’t get me wrong, I had a great childhood; I could laugh and play and get up to all sorts of mischief with my peers, but I always felt there was something not quite right. I didn't worry too much about it in the early days, I just chalked any weird tummy rumblings, toilet issues or feeling sick after every morsel I ate, down to growing up and that I'd soon grow out of it all once I was an adult.

Reader, I didn't.

Now that I'm that fully-fledged adult with all the frown lines and bills and endless conversations about bin-day under my belt to prove it, I have come to terms with much of the impact on my life being perpetually ill has had. I know my body much better than I once did and understand (mostly) how it works (and why it doesn't when it doesn’t). I know how to treat it with kindness and I try not to rage at it when it betrays me.

Chronic illness and continued and consistent pain can and will undoubtedly change a person. Not always entirely for the worse; in my case it has brought me clarity on what and who in my life is important. It has allowed me to work on my own flaws and my own self-worth and self-image and reminded me that health is paramount. It has helped me see there should be no shame or embarrassment around how the body works; that the more we talk the easier it gets. Its helped me see that not everyone will 'get' it, and that’s OK. 

But with all those positive side effects to a chronic illness, there are understandably negatives. Lots of them. For me, I try my best not to get bogged down in the negative ways my illness had changed me; but at the same time, I think it’s important to shine a light on them in an effort to try and help myself.

I don’t like that being incurably ill has made me angry, anxious, irritable, frustrated, withdrawn. I don’t like the impact it has on my family, my partner, my friends, my work and social life. I hate that it makes me oftentimes judgmental or impatient. But I have also made myself aware of all of that, and do my best to live around it. Also, I’m not for a minute implying I was little miss perfect pre-disease; I was also a walking human nightmare with a lorryload of neuroses before I got ill, now I just have medically confirmed reasons for most of them.  

I'm not suggesting I shouldn’t feel all of these things either. I am entitled to. Anyone with an illness that is affecting and/or essentially shortening their life, is wholly permitted to feel angry and sad about that fact. It's when we let those feelings consume us entirely that we make things harder for ourselves. We are entitled to wallow, weep and wail about our plight - in moderation. Don’t let that become the norm. Feeling sad, and angry every day is exhausting, I for one just don’t have the energy for it…

Lame & Fortune

It's no massive revelation for me to suggest that many 'celebrities' portray an unrealistic and often unhealthy idea of how life 'should' be lived. They show us toned bodies, perfect homes, beautiful children. We rarely see the 15 nannies, professional make up artists, stylists, hairdressers and live-in personal trainers they utilise to obtain this idea of perfection. It all looks idyllic, but it's fake. A faux-life lived in luxury that 'normal' people would have to run ourselves ragged in order to even come close to recreating. It's completely un-achievable for those of us on regular salaries, or even no salary at all. We could live a hundred years and never obtain the life our famous counterparts have curated seemingly for our benefit. 

So what of these 'influencers' in relation to chronic illness? 

We are constantly fed two main ideals in living with an invisible/incurable illness: 

1. You can do anything you set your mind to! 

2. This diet / product / lifestyle will cure you, too! 

In response to those points I would suggest; 1 No i can’t! and 2. No it wont! Apart from that, bang on the money. 

So on point 1. It might seem grim or even glib of me to suggest that simply because i have a chronic illness there are activities or experiences i wont be able to take part in in life, but its also accurate. It might also seem slightly depressing; it's not. Listen, of course, OF COURSE there are things i'd still love to do but am aware i can't. Dance all night for example, like i did before arthritis ruined my knees and IBD zapped my energy. BUT i can still dance. I just have to do it in moderation.

I know, i know, 'in moderation' the most BORING phrase in the English language. But do you know what’s also boring? Being hospitalised because you have over exerted yourself and caused damage to an already failing immune system. Almost collapsing because you have pushed your body beyond it's limit. That, let me tell you is not just boring, its embarrassing.

I know my own body - i know what it can and cant withstand, and i know when i'm pushing it too far. These things can only be learnt over time and through experience. Doctors can advise you not to dance to My Sharona on repeat for 4 hrs solid but you'll still do it. Because the music is in you, it just tends to get sidelined by active disease. 

I'm not suggesting just because we have a chronic illness we shouldn’t try new things; we absolutely should. Just exercise a little consideration for our bodies and the potential consequences. Experience with illness teaches us that for every 'fun' thing there is generally a price to pay - so being mindful of that isn’t depressing, it's just sensible! 

When we are met with stories about 'famous' men and women with the same condition as ourselves doing seemingly miraculous things; (running marathons, climbing mountains, winning Olympic medals, walking on water), we may feel one of two ways; inspired or disheartened. For me its generally the latter. That doesn’t mean i don’t think its wonderful what these people are achieving, i absolutely do, but it often just makes me feel maybe i'm not trying hard enough. Maybe i'm resting on my diseased laurels and i COULD win gold in the triple jump if i just set my mind to it.

When we are lying in bed unable to eat, drink or coherently communicate the last thing we need to see is someone with the same illness conquering worlds with the click of their fingers or feeding the 5000. 

The same applies when we are fed information by celebrities or illness 'advocates' which is inaccurate. Naturally, when we are at our lowest ebb and desperately seeking something, anything to take our pain and misery away, an advert for an all-in-one Aloe Vera cure-all smoothie looks more appetising than Bradley Cooper does to Lady Gaga.

Even the most seasoned 'professional' patients often fall foul of these celeb-peddled products. We greedily eat up diet books like they are going out of fashion and force ourselves into changing our lifestyle, often to the detriment of our physical and mental health. When we establish (generally pretty quickly) that living on a diet of herbs, smoothies and bracken found wandering the fairy forest doesn't indeed cure an incurable condition, we are angry, frustrated and back to square 1 emotionally. 

Being promised the world by someone we admire is intoxicating, but we must always remember that the person selling us the world might not always be doing it for the right, or entirely moral reasons, The chronically ill athlete may be able to win gold because he/she isnt suffering as severaely as you; it doesnt make you incapable of ever getting out of bed again.

I'm not suggesting this every celebrity hawking 'health' products is bad and should essentially burn in hell for all eternity, or that we shouldn't celebrate the achievements of those who share a disability with us, but 'Everything in moderation'.

Win gold at looking after number 1. 


Kathleen NichollsComment
Some Kind of Wonderful

When I am physically and mentally 'well' enough, I feel that I have a self-imposed responsibility of sorts to use my ‘voice’ for my chronically ill comrades stuck in bed, unable to defend themselves. Those lacking in energy to fight back against misunderstanding and mockery of their conditions.

I know that the vulnerability and often intense loneliness that comes with invisible illness can be overwhelming. Therefore hearing, and seeing people on the outside of our sick bed ridicule our illness or make assumptions on how we should and shouldn’t behave can be a sickening pill to swallow, and believe me we have enough of them to deal with already.

It’s natural that in life we won’t be understood by everyone we encounter, but it’s difficult to accept that unkindness could be utilised and even amplified against those of us suffering life-altering illnesses. There is a common phrase bandied often around by those with chronic illness; ‘You don’t get it, until you get it’. This basically means those without a chronic condition can’t understand what we are going through unless they have experience of it themselves. Not much we can do about that. I for one don’t have the skills or expertise to develop a formula to inject my illness into the veins of others and if I did you are god damn right I’d be patenting that quicker than you can say ‘THAT SOUNDS UNETHICAL’.

Despite my tedious attempts at making light of causing widespread illness amongst 100% of the world’s population, I’d actually prefer if we didn’t go down that route and instead just practiced tolerance and basic understanding, on both sides of the sickly fence. Besides I do not have the financial backing to put an essentially life threatening and undoubtedly illegal plan into action.

So, nonsense aside, what’s my problem? Well as I told my therapist, you DO NOT have enough hours in the day for that answer! Then we both laughed heartily because I am CERTAIN she had never heard that particular gem before! But back to that problem.

I find it unbearable when I am in the midst of a particularly awful bout of illness, to feel alone. Of course, I generally want to be physically alone; because no one needs to see me coated in sweat, writhing in pain and smelling like the corpse bride. It’s exhausting enough coping with crippling symptoms, without having to deal with entertaining someone else. Or at the very least staying semi-conscious in their presence. So, add onto that the idea that we have to encounter other people who then doubt our illness, berate us for what we can’t do, push us to ‘get better’ or simply imply we are overreacting, and the feelings of isolation are compounded.

Patients need and want to feel included in our friends and families lives. We don’t want to feel like outsiders, as internally we already feel that way more than you might think. We want to be included in ‘life’ not just when are well enough to ‘live’ it. Its so easy to just choose kindness over bitterness, annoyance, and irritation. So much of patient’s lives are felt feeling an immense amount of guilt and our inability not to give enough, in work, at home, in friendship, in love. When we are misunderstood or mocked it only serves to push us further into feelings of separation and exclusion.

We just want to live as normal lives as we possibly can despite our conditions. Just treat those with chronic illness the way you’d hope to be treated were you to fall ill; with a little empathy and not a hint of doubt. What’s the alternative? Me injecting you with a syringe filled with disease? Please don’t make me take out a bank loan and stockpile syringes. Again.

Kathleen NichollsComment