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Never Read The Comments

I recently wrote a piece on some of the more common misconceptions I have encountered in living with chronic illness. You can read it here if you’d like and are a total legend: 8 (Wrong) Things People Often Say About My Chronic Illness – and the Truth  

Not to toot my own horn, but I received lots of lovely feedback after this was published. Mainly from people who can relate to my experiences and/or have also encountered similarly frustrating attitudes towards their illness/condition.  However, as with every nice comment, there is always an accompanying slew of negative ones. I have learned to accept these mostly with grace and humility, because some can (and have been) constructive. Some just flat out insult my nose or various other physical features mind you, which are somewhat less constructive. 

But, despite however much I try to stick to my golden rule of NEVER READING THE COMMENTS, I came across a comment on that piece which upset me a little. Not because it was directed at something I’d worked hard on, or even mentioned my nose surprisingly enough, but because it reminded me of an attitude I encounter all too regularly in living with an incurable condition. 

Without typing it verbatim, the main gist of this comment was “you can either try to educate or just drop it and walk away”. This was in relation to an article focusing on my having pinpointed some of the more frustrating attitudes to chronic illness. My main gripe with this comment isn’t in its negativity; something we are all guilty of in living with a chronic condition every now and then. But more in the bitterness and depressing resignation I feel it displays.

I’m fully aware that, illness or not, with some people in our lives we eventually have to accept that we will never see eye to eye and have to gradually shed them from our circle for the sake of protecting our own hearts (and maintaining our sanity). I’m not naïve enough to think that everyone can be persuaded into our way of thinking either. In reality I’m personally one of the most cynical people I know.

But I do think most of us are essentially good.

Most of us want to help those around us when we can and make the lives of those we care for a little better. That’s why the idea that if someone just doesn’t ‘get it’ we should walk away niggles at me. Should we really give up that quickly and resign ourselves to a life of solitude? When I first found out I was ill – I didn’t ‘get it’ either, and I had it.  No one around me ‘got it’. We all had to be educated. Some took longer than others to adapt and learn to understand; one of those slow-learners was me.

One of the main joys in life is feeling understood. For everyone of course, but I’d wager in particular if you live with a condition which is unknown and commonly misunderstood. A common phrase used in chronic illness circles is ‘you don’t get it until you get it’ – which I ‘get’. It’s essentially impossible to understand someone’s pain and continued suffering unless you live with it yourself. But that doesn’t mean those without the same symptoms and issues can’t attempt to understand and at the very least empathise with us. 

Since my own diagnosis I’ve encountered every possible reaction to an admission of my illness. Distain, Disappointment, Disgust, Pity, Sadness, Discomfort. Many of these have been incredibly upsetting; I didn’t choose this life after all. It was sprung upon me and seemingly in an instant I was irrevocably changed to those around me. I became the sick friend, the sick colleague, the sick sister. I had to learn about my condition to help educate the people who love me. That education pollinates and spreads throughout families, mutual friends, workmates; until slowly people begin to grasp what we are going through.

Human connection can be one of the most happiness inducing experiences we can have. To be able to educate someone in an incredibly personal and vulnerable part of our lives can reap incredible benefits. It decreases our anxiety, helps us to build a support network we can rely on, allows us to talk openly without fear of judgement.

I’ve personally lost friends since I got sick. That in itself was difficult and heart-wrenching but has ultimately allowed me to focus on those who really want to ‘get it’. Those around me who don’t know how I feel, accept that they can’t, but they empathise and listen while I share. They don’t judge when I don’t show up, or let them down at the last minute. They listen with patience when I gripe and moan. I don’t assume I should be met with any special treatment because I have an illness. I hope, like everyone, to be met with a little kindness when I relay a daily struggle. I hope not to be judged or have presumptions made on how I should behave; just as I wouldn’t in return. Trying to educate those around us in our experiences and how difficult life with chronic illness can be is important, because even if we can’t help everyone ‘get it’, we can help hone our own skills in explaining the complexities of our condition, and maybe even make the whole conversation easier for the next person jumping on the sickly train behind us.

Kathleen NichollsComment
Do Worry, Be Happy

When I decided to embark upon writing a book about happiness, I should reiterate I wasn’t by any stretch of the imagination, an authority on happiness. In fact, one might say I was the polar opposite of an authority on anything, least of all happiness. A few months prior I’d actively considered throwing myself off a bridge. But haters are haters and I don’t have time for that type of negativity in my already increasingly miserable life. So, in my quest to distract myself from suicidal thoughts and a diet of nothing but chocolate eclairs, I considered what makes those around me happy.

In asking the people I love (and abject strangers) where their happiness stems from, I thought maybe I can get a hit of that sweet, sweet joy for myself. If I follow their rules for happiness maybe I too can be someone who smiles at strangers instead of assuming they are about to rob or murder me. Maybe I too could be someone that people refer to as ‘like a lollipop filled with sunshine’ or something equally as nauseating. Maybe I could even use statements like ‘lollipop filled with sunshine’ without feeling violently unwell.

But the more I thought about it, the more I considered quite how much effort this would take on my part and if I could be bothered with the hard work of finding happiness. Isn’t it something that should just fall into our lap? Like that time I ‘fell’ into the lap of a handsome man at work and briefly considered whether I would get asked on a date or met with a sexual-harassment lawsuit. (It was neither for those interested).

Maybe I’m just not designed to be ‘happy’. Maybe I’m destined to be detached, disdainful of everything and everyone, and to have a deep-seated hatred for people walking slowly in front of me in shopping centres.

Besides, there are actually some compelling ideas against happiness… For example, it’s been proven that happier people are more prone to prejudicial behaviour. A possible explanation for this is that a contented and happy attitude can allow people to easily turn to stereotypes or other caricatures when making judgements. Feeling blissful can cloud our judgement; imagine a cartoon version of yourself seeing only the beauty of life, skipping through meadows singing songs from Oklahoma and smiling as cartoon birds land sweetly on your shoulder. That version of you is less likely to spot the axe murderer coming towards you and lose their head, literally. It’s just science.

Other reasons not to reach for happiness at all costs, include the idea that a ‘blind pursuit of happiness’ may neglect some complicated effects associated with socioeconomic improvement. Those of us who strive to improve our status in life often subsequently report feeling less happy. This is as a result of achieving more money, more stature and more personal freedom can come more pressure, more greed, more expectation placed on us.  This can lead to feelings of inferiority, as if we have everything we ever wanted and are still not feeling the happiness we strived for, what has it all been for? We are left feeling we have the desire for more, more, more in our search for elusive happiness. That old cliché that ‘money can’t buy happiness’ may certainly be true for some. Although I don’t doubt it permits quite a bit of it on the incline.

But you see, in looking for ways to avoid finding happiness I’ve already given up. Much like getting out of bed for work every morning it takes will power. The mental strength required is exhausting, simply not to snooze the alarm again, not to call in sick because you had to blow your nose once in 1992, not to not try.

But for most of us happiness doesn’t come naturally. It’s life’s great con.

‘Once you find love you’ll be happy’; but have you picked up 4 day old boxer shorts from the floor? ‘Once you get your dream job you’ll be happy’; but have you met Linda who microwaves tuna in the office kitchen?

Some of us see the negative first, and it makes it hard to keep rose-tinted glasses on our face.

But happiness is everywhere. It’s not a constant feeling of euphoria akin to a 15 week long orgasm, or getting the last chocolate éclair in the shop (interchangeable feelings FYI). Happiness is unique to all of us and shouldn’t be looked for in the places we are told we will find it. It can come as a pleasant surprise, when we least expect it; it can leave us feeling lost when it goes. But to quote every philosopher and inspirational meme from the beginning of time; happiness starts from within. We are the source of our own happiness and shouldn’t expect others to provide it for us on a silver platter.

So, if you are feeling blue, like I often do; stop and take a look at what makes you feel good and actively try to nurture it. Exclude the negative thoughts and free up more room for the good ones.

(Just maybe don’t write a book about it, I don’t need the competition.)

Kathleen NichollsComment
IBD Book Reviews

Slight change of tac for this blog as I today review two of the current IBD related books on the market. Lots of information out there and here are two good places to find it!

 

IBD and the Gut-Brain Connection

Dr Antonina Mikocka-Walus

As a health scientist and ‘expert patient’, Dr Mikocka-Walus has written a book based on around the science of IBD and it’s connection to the brain. Interspersed with her own experiences with IBD, she gives an interesting insight into the condition in scientific detail. She provides detailed explanations of current treatment methods available for the condition, along with information on common issues such as fertility, surgery, and sexuality. Using her years of dedicated research, she looks at IBD in relation to age, psychological impact and alternative therapies.

This is an interesting read if you are suffering from IBD and want to educate yourself on some of the lesser discussed aspects of the illness, or prepare yourself for potential future changes. A very handy manual to consult for new and older patients alike.

 

Managing IBD

Jenna Farmer

Jenna writes in a friendly and engaging tone about the many methods available to patients looking to better manage their condition. Little time is wasted in explaining the intricacies of IBD as this book is more aimed at existing patients, or at the very least those with experience of the condition. Jenna does delve into detailed descriptions and explanations of the many procedures associated with treating IBD, taking away some of the fear and uncertainty of what these lesser-talked about procedures entail.

This is a helpful and handy manual, it even contains diary entries where the reader can insert their own ‘triggers’, notes or any probing questions they may have for their doctor. Its great to read a book focused around management and not one promising ‘cure-it-all’ soup recipes and the like. Jenna utilises her own experience, expertise and the insight of experts in the field to great effect.

 

(Many thanks to Hammersmith Books who provided these books for review purposes)

Kathleen NichollsComment
Love Letter to my Partner, from your ‘Patient’

My love, I am ill.

Unfortunately, despite the illness being mine to own, it means that living with me, and loving me, will sometimes be hard for you. For a myriad of reasons. I’m sorry about that, and I’m sorry that this ‘thing’ has made itself an uninvited partner in our relationship.

Illness is unfeeling and unpredictable. My illness is a daily challenge, and one I often struggle to cope with. I know you do too. You don’t tell me so because you are kind and compassionate and don’t want to leave me with any feelings of guilt; but I know. And whether you want me to or not, I do feel guilty. Becoming a ‘patient’ wasn’t part of the plan and certainly not something I’m sure you looked for in a partner.

Because of my illness I sometimes become withdrawn and distance myself from you. I’m not always aware of that, and I’ll continue to try not to. But I will. And I hope that you will always try to wade through my emotional quicksand and reach in to pull me back out before I get too deep.

I hope you will remember who I was before this, and who I still am; somewhat altered, and incredibly exhausted by an onslaught of sadness, frustration and pain, but still the ‘me’ you loved before and enduringly so.

Sometimes I will complain. Sometimes I will take my pain out on you, and my love I don’t mean to. I may struggle to express myself and hit out at the person I love most in the world. And my love, I don’t mean to.

Sometimes I will get frustrated at what I perceive to be my failings; those things I could do with ease ‘before’, and now find increasingly challenging. I will cry, and wallow in self-pity, and I hope you will be patient while I sheepishly shake myself out of it.

I will do all of this because I love you, and because I love life. I want to be ‘alive’ and feel alive and I will continue to fight the slow and often excruciating battle towards all the good stuff life has to offer. Sometimes that even feels like it cancels out the bad, and that is Maths I can get on board with.  

My love, you are my good stuff. I will endeavour to always be yours, and not to let the intrusive 3rd partner in our relationship steal all our bed-covers. Or our joy.  

Kathleen NichollsComment
All By Myself

It’s no secret that there are a lot of ‘embarrassing’ symptoms associated in living with any chronic illness. Those things we shouldn’t really discuss in so-called polite society. We don’t want to mention our explosive bowel movements during a high-class dinner party for example, and its apparently ‘frowned upon’ to remark on vomiting profusely during a funeral service. Hard to keep track of these social niceties isn’t it? A minefield one might say. (Coincidentally a place where it’s also ‘inappropriate’ to chat about bunions).

Feeling your condition is ‘embarrassing’, places a cloak of shame around patients. It makes us feel we shouldn’t talk about certain things for fear of upsetting or offending others. Funny that, because fear usually involves danger and uncertainty, and that’s something chronically ill patients live with daily. Fear is not hearing about the frequency of someone’s bowel movements.

Considering all this then, it’s understandable that having all this apparent shame surrounding conditions out with our control, it can often be hard to discuss our illness openly and honestly. Sometimes even with those closest to us.

I’ve been thinking a lot about much of our lives as perma-patients, is spent in waiting for the ‘right time’. The right time to talk about how unwell we are; and the worry around how those we love may react. The right time to ask the burning questions we need to ask our doctor; and the associated hornets’ nest of other potential problems that may come from alluding to a new symptom. The right time to admit we feel afraid. The right time to confess we feel alone.

Loneliness is an incredibly common aside of chronic illness. This can be felt if we live alone, with few friends, or if we are the life and soul of the party with a houseful of other humans. This can occur over time or sometimes overnight. Time moves slowly when you have a chronic illness, and isolation can creep up on us quicker than we might be emotionally prepared to handle.

It can be easier than we might think to become isolated, because when we are at our worst we are forced to spend time away from those we love. Whether that be as an in-patient in hospital, or just trapped in our own bed. (‘Trapped in bed’ might sound thrilling to those of you with 50 Shades of Grey stored provocatively in your Kindle, but we are not talking anything of the sort here; the only ‘grey’ thing here is probably our complexion)

Feeling unwell and cancelling plans is also infuriating and upsetting. It does however allow for plenty of time to overthink every detail of our lives. Especially when we can’t sleep; lying awake through the night is prime-time to relay every detail of that embarrassing thing we said to that cute barman in 2002, or how much fun everyone else in the world is having without us and our sickly misery-laden patter. Of course, none of this is logical or helpful in anyway, but nevertheless it persists.

We will often avoid seeing those we love because we feel hideous, we are too weak to do anything, we are feeling down, we are just plain exhausted, both mentally and physically. We won’t want to be a party-pooper (pardon the unintentional IBD pun) and feel that we have little to offer in way of conversation due to our having been up close and personal with nothing more than our duvet for several days/weeks.

But really, most, if not all of this is in our heads. We worry about what is going on in the ‘real world’ because we feel a bit imprisoned in our sick one. We assume everything, and everyone is ‘better’ on the outside and that we are alone in our plight. We don’t want to complain, because who wants to hear that?! And life, and everyone outside, has moved on without us. Minutes become years when you are staring at a hospital ceiling. Time passes slower than my bowels when I’ve eaten steak (OMG I WENT THERE)

But the truth is, illness and all, we are valued. We are loved, and we are missed. The isolation we feel is a symptom of our illness in the same way pain and nausea is. It’s exacerbated by stress and the flames of our self-doubt can be easily fanned by relentlessly strolling social media and seeing the picture-perfect lives of everyone else on the outside of our tiny world. So if you feel alone, have faith that it will pass. That those who care for you are waiting patiently to hug you, and love you and talk to you about anything and everything.

Bowel movements and all.

Miss Conception 2018

Not exactly new ground to tread I grant you, but here are a few common misconceptions on life with chronic illness I’d like to clear up if I may. (Side note: based solely on my own experience, before you wade into the comments and tell me I’m wrong and have an unattractive face/personality/bosom.)

We’ll look here at some of the more common phrases, unfounded expectations and downright insanity we with chronic illness encounter on an often daily basis. This list is by no means exhaustive, but it is frequently exhausting.

1.     ‘You can’t be in pain all the time...’

Firstly, never underestimate what we can’t or can’t do in living with chronic illness. Our tolerance for pain, discomfort and general life-upheaval is as high as Willie Nelson, and over time we often find ourselves able to decompartmentalise pain. We slot in into our daily lives because we have no choice but to. Of course, there are days where our pain is much worse than others, and sometimes we may need to take time off work, or visit the emergency room, or weep into our cat’s fur; none of that can be helped. Pain comes in waves and often despite our vast experience we just can’t stay on the surfboard. There’s no shame in that either; but the misconception that pain can’t be a constant is simply not true. Even on our so-called ‘good days’ we may still experience discomfort, anxiety and ‘pain’ of some sort. It’s only unbelievable for those who don’t have to live with it.  

2.     ‘You look fine, so you must be feeling fine…’

This is one of my absolute favourites. If anyone who said this had a glimpse into what effort it took to make myself look halfway decent and less like a swamp monster they wouldn’t be so bold as to say it in the first place. It’s no exaggeration to say that showering is a challenge, drying my hair is exhausting, painting my face seems fruitless as I’m always convinced my pain is written all over it. It’s true that when I do force my sorry carcass into dressing up and looking good I feel more positive about myself; but it doesn’t eliminate my symptoms; it’s just a skilled mask. It’s performance art, and we become masters at it. Never judge a book by its cover, or a patient by their costume.

3.     ‘You haven’t tried x, y or z and if you did you’d be better…’

Please believe me when I tell you that if I thought for even the most minute of moments that something would cure me, I’d be all over that like Donald Trump and the self-destruct button. As professional patients, we listen intently to our doctor’s advice, we follow it as best we can, and we try to live as healthy a life outside the clinic doors as we can. Ok, maybe not all the time, we are not all Grade A sickly students; but those of us who want to feel better generally try everything we can to get there. Of course, I’m not suggesting that offering us advice is wrong; it’s not and it often comes solely from a place of care and concern. But the effect it has on those of us with a chronic illness can be significant as it often makes us feel we are seen to be not ‘trying hard enough’ to get well, not doing as we’re told, or not knowledgeable enough about our own condition; all of which generally couldn’t be further from the truth.

4.     ‘You’re just being lazy…’

This one is flat out infuriating. Chronic illness is debilitating, exhausting and often all-consuming. The idea that we are just not doing as much as we can at home or at work is incredibly upsetting. The amount of effort it often takes just to pull ourselves out of bed each day can be enormous, every step towards getting a chore completed or finishing a task we take as silent small victories; to have them minimised or decimated as a lack of effort is an incredible self-esteem setback.

5.     ‘You couldn’t be doing x, y or z if you were that unwell…’

Again, an assumption based solely on what a ‘conventional’ idea of illness and/or disability looks like. The current dictionary definition of ‘disability’ is as follows: ‘a physical or mental condition that limits a person's movements, senses, or activities’. Any condition that ‘limits’ us can fall under this banner. Invisible or not. Because we are not in a wheelchair, carrying a white stick or wearing our Government issued “I AM DISABLED PLEASE TREAT ME LIKE A NORMAL HUMAN BEING” badge, doesn’t mean our disability is any less valid, or any less ‘real’. To assume what we can and can’t do is unfair and baseless. Limiting us before we have even begun. We are capable of a myriad of seemingly impossible tasks despite our illness, that’s just another aspect of what makes us wonderful.

6.     ‘It’s all in your head…’

I don’t know about you, but my head is far too full of Jon Hamm and cats to make room for inventing an illness. If I have any spare energy I’ll be using it to clean my house or walk my dog, not make up imaginary symptoms. Pain is never just ‘in the head’ because it demands to be felt; it doesn’t wait in line or patiently arrive at the end of a busy day, it appears when it wants and forces itself upon us whether we like it or not. (We don’t).

7.     ‘Being home all day must be the dream!...’

Have you seen day-time TV?! It’s great if you want to see an endless stream of adverts willing you into debt or closer towards your imminent death (MAKE A WILL! SELL US YOUR CAR! WE’LL BUY YOUR HOUSE! SELL US YOUR VITAL ORGANS! YOU’LL BE DEAD SOON YOU DON’T NEED IT!) No one in their right mind wants to be stuck in bed all day having their mind slowly numbed by TV and social media. It might seem like a fun distraction from reality, but when we are off work and ill, it’s for a reason. Namely our inability to function; ‘duvet days’ are replaced by sick bowls and enough painkillers to flatten 55 elephants.

8.     ‘You’ll feel better once you’ve had some rest…’

I could sleep for a hundred years and it wouldn’t put a dent in it. Chronic fatigue commonly goes hand in shattered hand with chronic illness and is a whole separate entity from simply feeling tired. It is an overwhelming need to rest, our body and mind constantly on the verge of shut down. It’s wading through treacle. Napping can be useful, but it’s simply foreplay to our main irresistible desire which is a full blissful night of uninterrupted sleep. This is often an impossibility as so much of our medication can cause insomnia, broken sleep, we may need to get up through the night due to cramps, pain, nausea. Putting our head on the pillow is a happy relief from an exhausting day, but it is by no means a miracle cure. It’s just another sticking plaster holding us together temporarily.

Kathleen NichollsComment
Body of Work

A few things I can comfortably presume I’m not going to care about when I’m on my death bed;

-Tummy rolls.

- Spots.

- Bad hair days.

- My double /triple/quadruple chins.

I know that when the time comes for me to say goodbye to this cruel world that my last few thoughts will not include frustration and mild-depression at having posted a bad selfie that only attracted 10 ‘likes’, or at how much back-fat was visible in that bikini circa 2002.

The point being, why then do we waste so much time while we’re still ably walking the earth in worrying about our appearance?

Don’t get me wrong, I am just as insecure (and oftentimes, vain) as the next woman. I have a million and one things I’d ideally change about my carcass were money no object, but then who would I be were I to make these changes? I wouldn’t recognise myself; quite literally. Or my bank-balance.

Isn’t the prevailing idea for us to make the best of what we have, not transform ourselves into clones of 2-bit celebrities? Where is the personality found in becoming a carbon-copy of another woman? Where is the joy found in spending hours obsessing over our own perceived ‘flaws’?

If that’s how you want to look, and live, then no judgement here. Everyone is of course free to do whatever they see fit to, and with, their own body. My only worry is whether or not we remember to take a moment to consider quite how much of our valuable time is spent focusing on appearance and in hating what we see in the mirror.

A good daily example for me would be those moments when I open the camera on my phone and it’s front-facing. I’ll recoil in horror and disgust, briefly questioning whether I’ve had a stroke. I’ll close the camera with the speed of light and shake my head at why I even allow myself to go out in public. I know logically, that no one, NO ONE, looks good from the angle of that Jammie Dodger crumb looking up at you from deep in your bra, but it still makes me feel physically ill at the reality of my visage.

Which, in turn makes me consider the rest of this particular bodily package and what it has to offer the world. And in those moments, it doesn’t seem very much. I briefly reach for the nearest brown paper bag to place firmly over my head, before stopping to consider whether or not how I look is the sole reason for my existence.  Logically I know that is absolutely not the case, but the packaging of a gift is what lures us in; no one wants given a gold watch wrapped in chip paper. OK that’s not entirely true, most of us would probably wholeheartedly accept that, but the point is; people do tend to judge a book by it’s cover. We are told constantly that first impressions count, so our appearance is the first barometer of ‘us’.

When we are lacking in self confidence physically, that tends to affect us mentally. This is especially true for those of us with chronic illness. Many of us have scars from surgery and endless procedures and needle-proddings. Our bodies may have changed over the years due to the effects of treatments  and medications. We are exhausted, and often struggle to find the energy to paint our faces or slip into out best gown. Unless we’re talking dressing-gowns then I am ON BOARD.

My own body has been through the mill since I became a professional patient. I have scars that won’t ever heal, I have poor skin, hair-loss, teeth and gums which have eroded, a myriad of other chronic illnesses as a result of my Crohn’s and Arthritis, and constant pain across some part of my body.

We are often told our scars are a result of how hard we have ‘fought’ an illness; this seems unfounded to me. Prior to my last major surgery, I simply watched several episodes of Bargain Hunt on my own in surgical stockings before being sedated and parts of me removed by a surgeon. The only part of ‘fighting’ I did after that was with my nurse to TOP UP THE MORPHINE YOU ABSOLUTE WITCH.

But this ‘fighting’ does come. After all the hospital dramatics. The fighting begins when we have to learn to adapt to our new bodies. Learn to love what we have been left with. Start to regain our confidence and physical and mental strength. Most of the fight has to be done within ourselves to overcome our perceived ‘flaws’.

Learning to love a chronically ill body can be challenging, especially when our bodies so often seem to be fighting against us; but like most relationships, they require care, love and endurance. Offering some of that up to ourselves is a great place to start.

I Can't Believe We're Not Better

Something chronically ill patients encounter on a regular basis is disbelief. This comes from strangers, friends, family and even our doctors and nurses. We are often met with doubt and scepticism over the extent of our condition, sometimes even from those closest to us.

We’ll encounter those phrases which are the verbal equivalent of an eyebrow-raise. Those occasions where we are made to feel we are being ‘dramatic’ about our experience or describing our symptoms in excesses which are considered wholly inaccurate.

This is a common aside in living day to day with chronic illness, and in my opinion, a much more damaging problem than it may look at first glance.

You see, when you minimise or even dismiss someone’s pain and suffering, it causes often unseen and, in some cases, irreparable damage.

You may think that overtly dramatic, or perhaps even complete nonsense; but try to take a moment to put yourself in the shoes of someone living day to day with crippling pain (physical and/or mental). For a start they are probably wearing surgical socks so wave goodbye to any semblance of style you may have had. But mainly, consider how you would like to be approached and treated by those around you if you were ill. Would you like to feel comfortable, open to express yourself, perhaps even loved and cared for? It’s what we all want isn’t it? Health issues or not. As human beings, every inch of us craves love and acceptance. And why shouldn’t we? We only have one life; why not strive to live it in the happiest way we possibly can?

SO.

Now consider that same scenario; you are suffering deeply. You venture into talking to someone about these feelings, and you are met with indifference. You are staring into a brick wall of scepticism, rolled-eyes, and judgement. You are not believed. Feels horrible doesn’t it?

Something I’m often asked as a patient who talks a lot about her issues on the internet, with friends and strangers alike, through a mega-phone in public car parks, and by holding up 80’s boom-boxes outside the houses of former lovers, is what those around us can do to make our lives a little easier. Most people I encounter are persistently kind and keen to help; they want to be allies to those of us who are perpetually poorly.  But there are those who just want to out-do us, ‘trump’ our experiences, or assume we are telling the whitest of lies about our lives. They choose not to believe us because they simply can’t relate to us, or have an bizarre sense of jealousy at any semblance of ‘attention’ we receive for an illness.

It should be easy to brush these attitudes off and move on. Skip off through the wheat fields in slow motion like a love interest from a 1940’s film. But it isn’t always that simple. For starters, slow-motion technology is more expensive and complicated than you might first think, and we are generally fitted with those annoying features called ‘emotions’ which can often overwhelm and upset.

The moments where a doctor, or worse someone I love has doubted me, have stayed with me for much longer than I’d like. The years I was doubted delayed my having life-saving surgery. They almost made me unemployed. They almost ended relationships. They almost killed me.

Believing patients is vital.

We know our bodies, we know our minds, and we know when those things are not working as they should. We need you to listen and learn, help aid our recovery and attempt to understand what we are going through. We need you to work with us not against us.

If you choose to judge and disbelieve someone who comes to your proverbial door with their fears rather than offering them an abundance of empathy, then you’ll find that door might just slam in your face a lot more than you’d like. Just bear in mind, that its always better to be kind.

Free Fallin'

A long-standing issue in my chronic illness ‘career’ has been my ability to faint at any given moment. I’ve fainted at festivals, at gigs, mid-dinner, anywhere the temperature goes above 20 degrees, mid-argument, during shifts at work, in the doctors, the dentists, the candle-stick makers (that ones not true but I’m sure if I’d been alive when candlestick-makers were still a ‘thing’ I would have hit the ground like a sack of potatoes there too), during, before and after medical procedures, at a wedding, not yet at a funeral, but I’m looking forward to the day that one inevitably does happen because HOW DRAMATIC WOULD THAT BE?!

Anyway, my point being, I can go unconscious much easier than is ideal.

My doctors and I have never really established why this fainting happens so regularly. I am generally supremely anaemic which doesn’t help, I have low-blood pressure; again, not a faint-reducer. But what I’ve established over the years is my bodies innate ability to shut-down access to its facilities at the pinnacle of stress, extremes of heat and/or pain. My body has a limit and when that is reached, it’s lights out for this meatball. Some of my ‘favourite’ fainting moments include:

-          Collapsing in a heap during a Gil Scott Heron gig and being accused of taking hard drugs

-          Collapsing in a heap during a Foo Fighters gig and being accused of taking hard drugs

-          Collapsing at a festival and yes, YOU GUESSED IT..

-          Collapsing when getting fluid removed from my arthritic knee and vomiting over myself

-          Collapsing mid-argument with my BF and falling down a flight of stairs

-          Collapsing while a nurse slap-dash-idly tried to take my blood and falling off a hospital bed

I’m basically a Carry-On film in human-form, but with decidedly less innuendo-based jokes in my arsenal. (Maybe I spoke too soon.)

Listen, as someone who LOVES nothing more than seeing people fall over and using self-deprecating humour to hide my intense securities, naturally these fainting-tales fill my giggle-meter up to the brim. These unfortunate experiences are far from funny while they are happening of course (I’m not a monster), but afterwards I always try to recall them with humour. Because what alternative is there in dealing with a body that often quite literally floors me despite my desperate protestations?

When I collapse after reaching my pain threshold, I always feel a bit pathetic and embarrassed. I recall the occasions where I’ve been able to withstand more intense and prolonged pain and feel like a bit of a failure. Not to mention having to deal with the opinions of those who witness such an inelegant tumble. Those within chuckling distance of me kissing the lino often jump headlong to their own conclusions; I’m on the aforementioned hard-drugs, I’m drunk, I’m faking it. All of those are equally insulting and inaccurate assumptions, but also understandable. The first guess for most when they see someone collapse is that it is somehow that persons’ fault. The patient in question has drunk too much (this is a particularly popular assumption in Scotland FYI), the patient has taken something they should have, the patient isn’t looking after themselves.

There is no easy solution to this either I’m afraid; I’m not expecting a blog post to change anyone’s perception when they see a stranger keel over in the street. But next time (after you have taken a suitable amount of time to laugh), try to lead with kindness. Don’t assume you know what has led to this particular literal downfall, just aim to be compassionate. A little kindness goes a long way, and its remembered long after the skint knees have healed over, and the dignity regained.

Patients Have Power

This piece has been entered in the ‘Patients Have Power’ Writing Contest run by Clara Health. This has been designed to raise awareness surrounding clinical trials. This cause is one I’m deeply passionate about and hope my post, and others, will help raise much needed awareness about the power of breakthrough research.

When it comes to ‘trialling’ anything I’m usually first in line. You have a new face cream that will ‘Benjamin Button’ me? First in line; spread that cream all over my pasty visage like Nutella on toast. You have a new flavour of ice cream for me to try? First in line; I’ll lap up that icy treat like a dehydrated pooch. You have a new line for me to stand in? FIRST. IN. LINE.

With that said however, when it comes to my health I tend not to take such bold and extravagant risks.

You see when living with chronic illness life is already a case of trial and error. Our doctors must use their expertise to find the best course of treatment or medication to help us manage our condition. Because every ‘body’ is different, and we all respond to medication in different ways, there is sadly no ‘one fits all’ treatment for an ongoing illness.

This is where clinical trials can step in.

My own experience with clinical trials has been varied and has exacted positive results to varying degrees as far as my symptoms are concerned; but despite this the experience of involving myself has always been a productive one.

Organisations like www.clarahealth.com are a fantastic source of expert and accessible knowledge on current and upcoming trials. They ensure patients are placed in trials that will ideally allow them access to the newest and most up to the minute treatments being developed for their condition, and vitally, ensure patients absolute safety and security at every stage of the process.

As a seasoned patient myself, when entering into any new trial I naturally feel a source of trepidation, but also a simmering excitement that I am in some way involved in potentially ground-breaking new research. In the cases where trials I’ve taken part in have been unsuccessful in managing my own symptoms, I have still exited the trial feeling a sense of satisfaction that I’ve helped in providing valuable data and insight. Even the smallest of involvement in a trial can cause massive ripples. The more clinicians know the more they can do to help us.

In that same vein, movements like Patients Have Power are an incredible resource for patients and health professionals alike. Living day-to-day with chronic illness can be utterly overwhelming. The ‘power’ over our illness, our treatment, our own bodies; is often taken away from us. We literally put our lives in the hands of others. But when we choose to make decisions over our own care, we begin to take back that power. When we volunteer for clinical trials we empower ourselves to learn more about our illness and hopefully step closer towards a viable treatment, or maybe even a cure.

We are more powerful than we often believe.

With that in mind, I’ll continue to get in line when opportunities that could make my life better present themselves. I’ll continue to celebrate my life and take back the power I feel I’ve lost when I’m being poked and prodded by strangers and doctors alike. When I feel invisible and powerless, knowing I have options takes the sting out of my hopelessness. My voice, even when it’s breaking and weak, still has the power to shout louder than ever for quality care. If we all come together and do the same we can achieve anything.

Now can someone get to work on that Benjamin Button face cream?