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The Never Ending Story

Since my diagnosis I’ve struggled to find ways to explain the complexities of my disease to others, in a brief, compact and informative way. I've established along the way that solving the mysteries of the universe or training to walk on the moon would probably be quicker and easier. Needless to say it's proven to be a continuous challenge.

When I find myself in the situation of having to discuss my illness with others, I’ll generally start with the basics: "I have Crohn's Disease" - if the other person hasn’t heard of it (90% of the time) - I’ll explain it's a bowel disease but can affects all parts of my body, internally and externally. By that point they’ve hopefully fallen into a coma or at the very least walked into traffic to avoid hearing more. If they are still present after that first sentence I’ll field any questions, providing as much accurate information and as little ‘woe-is-me’ attitude as I can muster.

I struggle with my own imagined assumptions that I’m instantly boring people, colouring their opinion of me in a way I’m not comfortable with, or sharing too much information too soon. I don’t want to make people feel uncomfortable or have them assume that I’m looking for sympathy or worse; pity. It matters to me how people react when I divulge the details of my illness, not because I’m vain or conceited, but because how it shapes my own view of myself is a constantly evolving issue. I assume that same rollercoaster ride will happen for outsiders getting to know me too.

I also want to start a conversation about illness which doesn’t mislead or leave room for incorrect assumptions on what chronic illness involves. I want to honour those other patients in the same sickly boat by not expressing myself clumsily.

The amount we as patients choose to share is of course wholly unique to each individual. It is dependent on countless factors, such as our own personal self-confidence, our knowledge of our own condition, fear that others will misunderstand or mock us, or simply being private people who want our illness to remain just that. Each and every one of those reasons for either sharing or withholding information are valid and shouldn’t be treated with judgement from anyone.

The world is full of people who want to tell us how we should and shouldn’t ‘be’ as patients. What we should and shouldn’t discuss, and what a ‘sick person’ should look like. None of that should rail-road us into pretending we are healthier than we are, play-acting at disability, or feeling the need to live life in quiet solitude as all well-behaved debilitated people should. Don’t laugh. Don’t dance. Don’t love. If you can live a fully-rounded and joyous life, then you can’t really be sick can you?

We own the rights to our own 'story' and can rewrite it to suit. We can choose how much of an impact we allow our illness to have on those around us, if unfortunately, not ourselves. What we elect to share is up to us to decide. Sharing is normal and natural and a need for understanding is inherent in all of us, so if you want to tell your story then do so. Don’t be disheartened if you don’t get the response you were looking for first time; like the best stories, they are not to everyone’s taste. Doesn’t stop them becoming classics.

Kathleen NichollsComment
Double Strife

Often in living with chronic illness I feel like I’m leading a double life. Not in the sexy spy-from-the-films-type-of-way, but in the sense that most of my days are spent pretending I’m not feeling 100% ready to be fitted for my coffin. I also spend much of my days dramatizing situations for the sake of writing, but that just an occupational hazard I’m afraid and nothing to do with that previous sentence.

I regular write about live with several illnesses because I like to try and spread awareness and help other patients feel understood and less alone. However, I don't like writing negatively all the time about my conditions, because they have opened me up to many new experiences, calcified stronger relationships and given me a greater sense of understanding about my own body. But as with most things trying to slowly kill you, the bad points do tend to outweigh the good. It's a bit like finding out you've been living next door to a serial killer and saying, "But at least he always took our bin out...". Try as you might the negatives always drown out the good. 

So back to my double life.

I get up, walk the dog, cycle to work, hold down a job for around 9hrs a day, come home, housework, dinner, TV, bed. Start the whole cycle of drudgery over again tomorrow! Nothing unusual here you may think; we all do it - get over yourself! OK, rude. Also, I forgot to mention the part where I do all of that in near constant pain and discomfort, in continuous anxiety about my possible need to rush to the bathroom, or worse to be admitted to the hospital.

I do it all in an often debilitating mental-fog, where I’ll struggle to remember words, lose my thread in conversation, even struggle to see clearly through extreme exhaustion.

I don't say any of this for sympathy or some sort of award. Although if you did have a couple of toilet rolls, some old Quality Street wrappers and some PVA glue you could probably make me a makeshift award if you weren't so bloody selfish. 

I’ve found it’s often uncomfortable for some people when we as patients are open and honest about our illness. They’ll either try to relate in some way ("My Great Grandad twice removed had a broken toenail once so I know exactly what you're going through") or tell you what you should be doing to get yourself on the road to Cure-sville, ("Mainline Aloe Vera" etc). Patients will often feel we can’t be honest about our ailments because of this. It might seem minor in the grand scheme of sick things, but when it’s everyday it’s pretty infuriating.

As patients, when engaging with others we will often feel like we should have an ‘excuse’ for our relentless exhaustion. We stayed up too late watching TV, couldn’t sleep for a car alarm outside, rampant group sex, etc. At least that way we can take the blame for our fatigue and subsequently have our wrists proverbially slapped before continuing with our day harbouring a deep yet unspoken sense of resentment for our colleagues. You know, the healthy way.

It just doesn't ring true for some to say you’re shattered 1st thing in the morning after a 10 hour sleep, because if you don't have a chronic illness you haven't had the pleasure of that experience. I'm so grateful if you haven't by the way, if you are reading this and are as healthy as a family of granola bars wrapped in lettuce then I’m genuinely happy for you. It just means you might need to stretch your imagination a bit further when we tell you we want to be knocked unconscious upon opening our eyes in the morning.

The easiest thing to do is simply take us at our word. Just trust that we know and understand our own bodies and might not welcome doubt and judgement when we express how we feel. Our double lives mean that we look 'fine' but feel anything but, so just imagine for a moment we are actually telling the truth about our symptoms and act accordingly. We don’t expect anyone to know the ‘magic words’ to say, because there aren’t any. We don’t expect anyone to have all the answers to our gripes because there aren’t any. We don’t expect anything from anyone but a little understanding.

Handle With Care

I saw this tweet the other day (credit to @AmelieMeltzer) regarding the recent discussion around Selma Blair, an American actor who has been open and frank regarding her diagnosis of MS:

"Selma Blair is white, wealthy, & literally famous and still doctors shamed her and dismissed her symptoms for YEARS. Imagine the barriers women who do not hold these privileges face when seeking care. We've gotta do better"

This got me thinking about a topic that is close to my heart, and mainly bowels; the dismissal, and oftentimes condescension, of women’s’ pain by medical professionals.

I'd bet my house, boyfriend and cat, on the simple and depressing truth; that almost every woman with a chronic illness has experienced some form of medical-centred dismissal in her sickly history. OK, in the interests of transparency, maybe I wouldn’t bet my cat on it, just in case someone with too much time on their hands fact-checks this, but you can absolutely have the other stuff. 

Maybe it’s even dismissive of me to dilute my own theory down to just women with chronic illness. In fact, its highly likely that most women have experienced similar behaviours when visiting their doctor’s office, chronic conditions or not. 

Disclaimer before I properly begin: It’s important to understand that I do not intend to bash doctors here. I deeply and enduringly LOVE everyone who works in the medical profession and have had my own life personally saved by them time and time again. I also wholly appreciate that working with patients’ day in day out is an exhausting and often thankless job, and I would never want to be seen to degrade any of that whatsoever. So now we’ve gotten that out of the way, lets get into it.

So what sort of unpleasant ‘behaviours’ am I talking about here exactly?

From a personal viewpoint, I have countless tales of instances where I have been disbelieved, doubted, accused of overreacting about or implying my pain is worse than it is.

All from doctors or nurses.

I've almost died because I was repeatedly told there was nothing wrong with me when essentially my body was eating itself from the inside and rapidly shutting down. This is depressing enough on its own, but I’m also well aware I’m absolutely not alone in this. Those of my friends who, like me, live with chronic illness(es), all share similar horror stories. From the dramatics of near-death experiences to the more mundane, but still upsetting, idea of being made to feel like you are a hypochondriac; all of these situations leave us anxious, afraid and increasingly frustrated.

Of course, a situation like this would be bearable perhaps were it a one off. But sadly, these experiences are recurring. We are told repeatedly that our symptoms are all in our heads, that we are overreacting or being hysterical. This insinuation that we are dramatizing our illness is a common thread amongst women all over the globe. The general consensus amongst the media, and men with a below average number of brain cells is that we just can’t keep a lid on those pesky emotions of ours! We just aren’t able to walk past a cat sanctuary without slipping on a puddle of our own tears and ruining our petticoats, so how can we expected to understand how our own bodies work?!

Having been faced with male doctors, specialists and surgeons all telling me there is nothing wrong with me when I categorically know there is, I understand and share the frustration that all my fellow ladies entering hospitals feel. One of the most excruciating things to do as a woman, is break down in tears in front of one of these men. All it does is confirm their unashamedly sexist opinion that we are overly emotional and therefore overplaying our symptoms. Maybe we are doing it for attention? Maybe we are doing it because we just love to be around aging doctors whose attitudes are stuck firmly in the 1930’s so that we can breathe in their steak and kidney pie scented musk? Either way, what we would know, we’re too busy thinking about bunny rabbits and periods.

Talking of periods, as we women always are, matters of the vagina and it’s surrounding colleagues are a common topic rife for this style of dismissive doctoring. We women are often told we just need to ‘deal with it’. This is just the way the body works, we are told. We’ll just have to take stronger painkillers or start wearing sanitary towels with the wingspan of a Boeing 747. We must understand that periods are just part of being a woman and we should just get the kitchen cleaned and distract ourselves.

Ok I might be being a tad facetious here, but as women we do understand our bodies, our cycles, our pain. This means we also know when something is not quite right. We share stories with our female friends, we take advice from fellow vagina-owners and visit the doctor generally as an absolute last resort. Often risking our lives in the process. We avoid dealing with male doctors because we are routinely humiliated, patronised or talked down to.

Our periods are often just that, a full stop to any further discussion around what might be at the root of our symptoms.

A strange contradiction on this outlook is the idea that as women, despite being considered delicate little flowers unable to understand how our own defunct carcasses work, we are generally expected to 'deal' with things much more stoically than perhaps our male counterparts. For having such a gentle, liable to break at the slightest hint of a breeze, or breakdown in tears at a dog rescue advert-reputation, us women seem to be expected to shut and put up (with it). Maybe it’s because we’re the ones who have the babies. After all, if we can handle that level of pain then why are we complaining about everyday symptoms like excessive rectal bleeding, lumps where they shouldn’t be, or stomach pain strong enough to flatten an elephant?

The thing is, we are women; not wombs. Not all of us have, or even want to have children. Not all of us want to be faced with the assumption that our main goal is to rear a child. Often some of us just want to be ‘well’. We don’t want to hear how ‘lucky’ we are that we are still young, or physically able to bear a child, or that we don’t have a much ‘worse’ condition.

We just want to feel understood and heard.

Some of my most memorable moments in my sickly history have come from women (and in the interests of transparency, some men) who have taken the time to listen to me and act not on their own assumptions but on my words.  They have not based their diagnosis on how I ‘appear’, my weight, or my ability to hold down a job. They have acted on my feelings, my admissions of my often shameful symptoms, and on my courage to be completely honest with an abject stranger.

It’s worth remembering that many of us still fear doctors. We are afraid of hearing results that will essential change our lives. We are anxious to bare all, emotionally and physically. We are dog-tired from explaining the same story over and over again to new faces each time; anxiously waiting to see how they will respond. Whether or not this doctor will ‘get it’.

In chatting with women from all over the world, friends and strangers, I’m well aware that I’m not alone in my steady and simmering terror in meeting new doctors. My absolute exhaustion at feeling misunderstood. My feelings that I’m going slightly mad.

Here’s a beyond grim top 10 of some things women I’ve interviewed have been advised by medical professionals:

1.      “This medication should be working based on your physical test results” – does this then mean the patient is lying? Or that she wasn’t ‘ill enough’ to warrant ‘better’ medication?

2.      “You should be thankful you don’t have cancer and should go home and enjoy your kids” – Implying that cancer is the only illness worth treating? That she should just put up with life-altering symptoms just because ‘it could be worse’?

3.      “You have an eating disorder” – this is a common thread amongst women’s stories of medical mismanagement. Rapid weight loss often drives doctors straight to this conclusion. Despite our continued and increasingly frustrated protestations to the latter.

4.      “You won’t admit it so there’s nothing I can do” – regarding the above; assumed we have an eating disorder and holding a proverbial medical gun to our head that if we won’t admit something we know to be false we won’t be treated.

5.      “It’s just anxiety, you just need to stress less” – it’s well proven that anxiety and stress do generally serve to exacerbate or even set off symptoms of chronic illness, in particular those of an auto-immune nature. But let us at least get to the diagnosis before we dismiss any potential condition as ‘just anxiety’ shall we? Also have you tried to ‘stress less’?!

6.      “Just be glad you don’t have ____” – playing medical Top Trumps is cringe-worthy enough when patients do it, but doctors? Depressing.

7.      “Some doctors don’t believe in that.” – this was regarding a diagnosis of M.E. after years of disabling symptoms. How utterly soul destroying to hear that even those who should be knowledgeable on your condition don’t actually believe it to be a real thing.

8.      “You just have a bad diet” – bearing in mind that most of us don’t rush to the doctor at the first sign of trouble. Sadly, we find our fingers reaching for Google and awaiting the inevitable on-screen death sentence that follows. We then try to cut out foods, eat more of certain foods, drink less alcohol, drink more water, do anything and everything we can think of, ultimately THEN seeing the doctor. So, don’t teach your Granny how to suck eggs. Or eat more of them.

9.      “I’m sure you’ll be perfectly fine” – this usually comes after a 5-minute consultation. A decision made on looks alone, no examination, no blood tests run, no samples taken. A dangerous assumption based on nothing but speculation.

10.  “Women your age don’t get cancer” – I mean unacceptable doesn’t even touch the sides here in terms of describing this one.  

 

All these examples barely scratch the surface of the countless inappropriate moments we women have shared with medical professionals. And again, please don’t misconstrue this piece to be an attempt to diminish the incredible work done by the majority of our doctors.

But we can still do so much better. We can treat the person as well as the patient.

We are whole people; our conditions are not our identity. But just as you wouldn’t meet us for the 1st time and insult our profession, our clothing, our family; don’t insult our own pain. Our own insistence that something is wrong shouldn’t be dismissed so readily based on ‘time-wasters’ you might have come across in your career to date. We have lives to live, families to raise, careers to advance. We don’t want to waste our time either; we don’t want to be in your office, on your hospital bed, on your operating table. Unless of course, we know that we absolutely must.

Please listen when we tell you we know our bodies.

Don’t wait to take us seriously.

Don’t make us wait years to be understood or accepted.

Our lives literally depend on it.

Can't Fight This Feeling

I don't like fighting. I’m not good at it.

Physical fighting; nope. Never tried it, no thank you. Unless you count fighting with my baby brother, then yes, I was all in, right up until he won, and I’d revert to mild psychological torment or simply yelling "MUUUUUUMMMMM!!!!!!".

Verbal sparring, I'm not good at either. I get too emotional and defensive. I burst into tears then lose my thread of thought and wave goodbye to any coherent point. So, as I said, fighting isn't my strong suit.

Why then, am I expected to 'fight' my chronic illness?

I don’t know about you, but when I think of fighting, I picture musclebound tough guys oiled up to within an inch of their lives, probably wearing big boxing gloves and maybe tiny velour shorts barely concealing massive thighs and I'm sorry what were we talking about?

Ah yes. Fighting.

I picture Sly Stallone running up steps or punching carcasses: I certainly don't picture myself, diving out of bed ready to face the day with aplomb. Ramming a ‘health bar’ into my face hole then jogging all the way to work, stopping only to drop and give myself 20 every few yards, before stepping onto the treadmill I have built into my desk and punching absolute f**k out of my workload. I mainly don't picture any of that because it's ludicrous and beyond the realms of possibility. I MEAN have you eaten one of those health bars? I'm not big bird, let's lessen that seed content amirite?! Also, I health bars aside, I generally have the energy levels of marathon runner at the finish line upon waking/always.

Being told to “keep fighting!” or being referred to as a “fighter” or a “warrior” always tends to grate with me. I know when these phrases are used they are (generally) meant as a form of encouragement and perhaps even complementary. But to many patients with chronic or incurable illness it just comes across as irritating and at times even insulting.

For starters, what else would you suggest we do to ‘fight’ our illness? What nuggets of black-belt based wisdom do you have to offer that we (and countless medical professionals) haven’t already thought of or tried?

To put things in perspective, personally I have been ‘fighting’ for almost a decade now. Funnily enough, due to the incurable element of it, I haven’t beaten it yet. Since my diagnosis, I have had no choice but to ‘fight’. I have gone through seemingly endless procedures, surgeries, medications, trials and hospital stays, spent nights chained to the toilet or writhing in agony, and essentially this all leads to the repeated and often overwhelming feeling that I just cant do any more of it.

But as I said, I have no choice. Lying down and taking all this simply isn’t an option.

My other gripe with this phrase is the implication that those who’s symptoms have worsened, or worse, those who have passed away from their illness, simply didn’t ‘fight’ hard enough. Incurable illness is just that; no amount of fighting it will suddenly change that fact. The idea that those who have died from their condition simply didn’t try hard enough makes me sick to the very depths of my stomach.  

Like any defunct piece of kit, my useless carcass must be maintained, tinkered with and maybe even rearranged to keep it running. I must do what I’m told and trust in the expertise of those caring for me to live my life as fully as I can. I don’t consider any of this to be ‘fighting’; simply doing what I must in order to exist.  

With an invisible illness, we are often taken at face value; therefore, if we look ‘well’ we must be better. For most of us, this is a skilled façade, there is no ‘better’. We may appear well to outsiders, but underneath we are still struggling, albeit in private. Because you can’t see us ‘fighting’ and punching meat carcasses in a massive fridge doesn’t mean we aren’t. Our ‘fight’ is constant. There is no winner, nothing to beat. No reward. We sometimes get angry with our lot, angry with the world, angry with you. Our audible acknowledgement that life can be cruel and unfair doesn’t mean we have given up.

So, when we take moments to wallow and admit we are struggling, please do not confuse that with us seeking encouragement to get back in the ring.

I for one cannot pull off a leotard.

Kathleen NichollsComment
“there always seems to be something wrong with you.."

Throughout my years in living with chronic illness, a phrase I’ve encountered much more often than I’d like is, “there always seems to be something wrong with you”. I’ve never fully understood the relevance of this phrase. Is it a question? A statement? Am I expected to respond? How am I expected to respond?

Despite this phrase generally stirring up feelings of frustration, irritation and disappointment, I’ve tried to react to it in a variety of different ways over the years. With gentle agreement, that yes, I have multiple chronic illnesses, so unfortunately there is always something wrong with me. But by the time I’ve gotten to the end of that sentence the other person has generally walked off for fallen into a deep coma.  I’ve tried responding with mild anger; that yes, I’m always ill and it doesn’t help being made to feel I’m being doubted by other people. I’ve even tried sadness; advising that it is distressing to feel questioned or misunderstood when really, it’s difficult enough dealing with all of this on my own without judgement.

Despite this mega-mix of responses, none of them seem to have stuck, and the phrase is still one I hear semi-regularly whenever my condition(s) are mentioned. (Even if it’s not me who is bringing them up in the first place).

To give a bit of context as to why this passing comment sticks with me in such an unhealthy way, let me explain why it can be like fighting a losing battle discussing multiple illnesses with those outside my intimate circle. Not a euphemism.

At 35 I’m still ‘young’ – ish. In the logical world I shouldn’t have crippling conditions that affect my internal organs, my bones, my joints, my skin. All of that shutting down of the body comes later, when we are creeping up on death like the Grim Reaper in Crocs. It’s certainly what I thought anyway. I was diagnosed with Arthritis at 25 and suddenly found I struggled to walk, felt immense pain from the slightest micro movement and looked towards a life with an incurable condition that ‘old people’ usually had. For a long-time I was advised (despite having had a medical diagnosis) that it was just a sprain, or just growing pains or just my knees trying to live out their dream of becoming fat red balloons. Preconceived notions on what illness should look like and when it should strike, are usually always wrong; although trying to make that notion understood is easier said than done.

Talking about illness(es), isn’t an attention seeking process. It’s a part of my life, and when I share with people, I generally try to share the good and bad. When I am discussing a condition for the first time it is never to extract a certain reaction, or even worse; pity, but simply to advise on something that affects my day to day life. Just as you might tell me you love Tom Hanks films, I might tell you most days I feel so tired I could give Sleeping Beauty a run for her money. It doesn’t mean I’m looking for sympathy, it’s just a fact of my life and ideally an in to help you understand why I might accidentally enter the World Yawning Championships in the middle of a meeting.

It’s important to remember that I don’t want or choose to be unwell 365 days a year. Ideally, I’d be living it up eating vats of mashed potato while guzzling milk at a rate of 6 pints per minute, while dancing to Abba and doing the perfect splits. But sadly, for me that particular childhood dream is over. When one illness flares, it tends to domino neatly into the others, setting off symptoms all over the body. Medicating multiple illnesses is also a gargantuan challenge. What works wonders for one can cause an exacerbation of symptoms in another. Seeing multiple specialists for different conditions means we also need to ensure we are remembering the details of every other medication so as not to be prescribed something which might set off an adverse reaction elsewhere.

Naturally with several different illnesses, it can be difficult to pinpoint exactly where issues are coming from. We become so anesthetized to living daily with pain and discomfort that eventually all individual issues meld into one useless carcass. Having multiple chronic illnesses is a full-time job in itself (with no annual leave and absolutely no benefits scheme).

The unpredictability of chronic illness is something often spoken about, and a definite life-changer. Not knowing how we might feel from literally one hour to the next is understandably stunting in many areas of our life. We might have to cancel plans at a minute’s notice, leave work early, or take ourselves to hospital in the afternoon after feeling tip-top in the morning. This can lead to isolation and intense feelings of loss; in our personal life, professional life, even in the decimation of what we had expected or hoped from our future lives.

To cut a life-long story short, having multiple chronic illnesses is like having an incredibly unpleasant full-time job we never have a break from. Waiting for that break is intensely frustrating, as we often constantly have to remind ourselves it will never come. When one illness is under control another rears its ugly head and reminds us that yes, there is always something wrong with us. We don’t need a reminder from outside sources; our bodies kindly do that work all by themselves…

Kathleen NichollsComment
A Kind of Magic

At my first Yoga class after the Christmas break, my Yoga instructor advised us she hadn’t made New Years Resolutions, but she had certain ‘intentions’ she wanted to implement into her daily life; the main of which being kindness. Specifically showing kindness to others and trying to impact peoples’ lives in a positive way. Which is of course lovely, and what better way to start a new year than with an intention of inherent ‘goodness’?

This got me thinking about the idea of kindness and how easy it can be to forget to enact it. We can be harsh, unfeeling, hurtful, obtuse. That’s all fine to an extent; we are multi-faceted, but often something as simple as a kind word, or choosing to bite our tongues in an argument can be forgotten. The impact of kindness is not to be sniffed at. The most memorable experiences from my countless hospital stays have been the moments in which a nurse or a doctor showed me kindness. My favourite school teachers were patient and kind. The people I love most in the world are innately kind.

Kindness is always important. But how often are we kind to ourselves?

Living with chronic illness means we spend a lot of time thinking about ourselves. We are forced into selfishness as we have more general ‘upkeep’ of our own bodies and health to undertake. We are forced into actively monitoring our conditions and listening to our bodies in order to ensure we are looking after ourselves as well as we can. This can feel selfish as recovery, and general maintenance of a chronic illness are trying and time consuming. They eat away chunks of our days. They can stop us eating, drinking, having a social life, keeping a job. So, when we are well, we generally have to catch up with ourselves; the work we’ve fallen behind with, the housework we’ve had to neglect, the social events we’ve had to reschedule. It can feel we are constantly working to a different calendar.

We can forget to show kindness to ourselves. Sometimes we just can’t (or wont) find the time for it. The kindness we would show to a loved one should be equal to the kindness we show ourselves.

So here are a few simple ways to show a little more kindness to ourselves day by day so we can be a bit easier on ourselves, and make my Yoga instructor proud which lets be honest is what we are all aiming for.

Stop Tearing Yourself Down – Kindness involves forgiving ourselves. Everyone makes mistakes, the trick is to accept our faults and look at how we can improve on them rather than beating ourselves into submission with a proverbial stick. On the occasions we are angry at ourselves, kindness involves calling a halt to blaming ourselves, and instead resolving to do better next time and not wallowing in our misery.

Soothe Yourself – We all know how to ‘self-soothe’. It’s important to find a spot after a hard day to do something just for us, something that makes us feel good. Be that soaking in a bubble bath, getting lost in a good book, cooking your favourite meal or screaming incoherently at passing cars; whatever helps you to relax. I appreciate it might be harder for some of us to find this space in our day; you might have 14 children and 5 husbands – maybe lock yourself in a wardrobe with essential oils or something I don’t know I can’t be expected to do all the work.  

Silence Your Internal Critic – Ok, this one is easier said than done, as my inner critic is a LOUD MOUTH. Seriously she will not shut up about how awful I look, sound, perform in every activity from my work to simply breathing. (How can you breathe wrong?!) We all have a voice in our head who loves to judge and criticise us; most of us listen to this voice a lot more than the other voice who defends us. Banish the inner critic by thinking logically and focusing on our positives rather than how weirdly we breathe.

 

Remind Yourself You Are ‘Enough’ – Nothing has to happen to make you ‘worthy’ of anything or anyone. You are already enough. This is an idea many of us struggle with. There are occasions in everyday where we feel not attractive enough, intelligent enough, strong enough. We deserve happiness and success and listening to our self-doubt just stunts our growth. Ignore it.

Carve Out ‘You Time’ – Try to find a space in each day to do something just for you. Take a moment to undertake something that brings you joy. That might be anything from leaning into your creativity; writing, drawing, playing an instrument, to binge watching a box-set, having a bubble bath with a book or enjoying another lovely 12-person orgy. You do you.

Recognise Your Achievements – We are quick enough to acknowledge the achievements and successes of those we love, but rarely stop and pat ourselves on the back. Identify that acknowledging work we are proud of isn’t arrogant or egotistical, but a natural response and one we are allowed to dwell in for a little. Dip a toe in the self-confidence pool, the temperature is lovely!  Only 5 children have peed in here!

Show Yourself Compassion – Consider what you would tell a loved one who is struggling or hurting. Be your own cheerleader, your own best friend; treat yourself as you would treat others. Show yourself the same compassion you would show someone you love. Reassure yourself as you would them. Care for yourself as you would them. Just don’t try cuddling yourself too, especially not in front of your living room window as your neighbour Greg might see and it would be incredibly embarrassing. I WOULD IMAGINE.

Kathleen NichollsComment
We Wish you a Mindful Christmas

Merry Christmas one and all! Happy Hanukah, Kwanzaa or whatever you choose to celebrate this month!

However despite the often overwhelming pressure to ‘have fun’ at this time of year, many of us can find it an incredibly tough few weeks. Our problems don’t tend to evaporate at the first sight of egg-nog, so this festive period can become an additional pressure on top of existing issues. Some of us may be struggling with bereavement, job loss, financial strain, illness or mental health issues.

So I thought it might be useful to list a few things we can watch out for maybe be wary of affecting our loved ones. Bits and bobs we might not normally hear over the deafening sounds of festive frivolity.

-          Try to pay attention to the behaviour of friends and family - mental health conditions can vary, which makes it difficult to recognise when someone might be struggling, but often a small change in behaviour or temperament could indicate someone is perhaps anxious or depressed. 

-          don’t make assumptions - it can be upsetting to hear a loved one is suffering especially at this time of year, however it's not your job to diagnose nor attempt to 'cure' them. Listen with an open mind and resist the temptation to give advice, as it can often come across as judgmental.

-          If someone comes to you with a problem, they often don’t want a solution, just someone to listen in the first instance. Allow loved ones to lead any discussion at their own pace and try not to second guess their feelings.

-          Remember that not everyone finds Christmas positive - it often raises nostalgic memories which can be a difficult and painful. Bereavements, job losses, financial pressures & the need to spend a lot of time together after long periods of not seeing family and friends can exacerbate tensions.

-          be encouraging - Christmas is stressful, and despite the push for everyone to get together this pressure can cause people to isolate themselves from loved ones. Encouragement may be offering someone the space to confide in you about how they're feeling, or simply keeping them company. 

-          sit down and talk - show you're willing to listen to loved ones about their problems. If you can meet in person, monitor your body language and focus your attention so your loved one feels a priority. If contact is over the phone, keep it regular.

-          take care of you- caring for an ill family member or friend can be incredibly stressful, and you may need emotional support, too. Likewise, a loved one may require specialized help you may be unable to provide. If so, try to encourage them to talk with others or offer to accompany them to a GP.

-          don't enforce fun - it’s important not to be too pushy, and allow those with anxiety to breathe and decide their best way of 'being' during the festive season

-          keep a routine- mounting social engagements disrupting normal routines can be anxiety-inducing. When someone suffers from anxiety, it’s vital not to put additional pressure on them to do more than they feel comfortable with or force them into situations before they feel ready

-          be aware of triggers- with the pressure to socialise at Christmas, there's also the temptation to overindulge. Be mindful that not everyone is able to join in; illnesses, addictions, mental health issues can all be exacerbated if people are goaded into the festive indulgence 

-          If you or anyone you know is finding things difficult right now there are some links below to great mental health organisations below. The Samaritans helpline is also free on 116 123. Big love and see you in 2019 x x x x x x

www.nhs.uk/conditions/stress-anxiety-depression

https://www.nhs.uk/conditions/stress-anxiety-depression/

https://www.mind.org.uk/

https://www.samaritans.org/

https://www.anxietyuk.org.uk/

Kathleen NichollsComment
Chronic Acts of Love

I’ve been suffering from a severe, chronic and incurable illness for (officially) almost a decade now. As this week, 1st to the 7th December, is Crohn’s and Colitis Awareness Week, I thought I’d take some time to reflect on what being ‘chronically ill’ has meant for my life.

Living with a misunderstood and debilitating condition like IBD (inflammatory bowel disease) is a continuous learning curve that just seems to get more and more curvaceous the longer you live with it. That said, being a ‘sick’ person has taught me more about myself than any libraries’ worth of books ever could.

I’ve learnt to value good health when I have it, trained myself to focus with sniper-like vision on what and who is important to me, learnt to value love, learnt to value life

There are some general similarities for most of us with a chronic condition. Pain and discomfort on a daily-basis are a challenge. Chronic fatigue is like wading through treacle from the minute we open our already stinging eyes. Constant trips to and from hospital become a depressing part of our routine. We learn to adapt our lives around our dysfunctional bodies. We undergo a metamorphosis of sorts. But as an ugly caterpillar transforms into a beautiful and vibrant butterfly, we often feel we’ve performed our transformation in reverse. As our appearance changes, our bodies fail us, and our confidence dwindles, we retreat into our cocoons. (I’m talking about our bed here in case you’re missing the massive neon-signed analogy I’m attempting…)

Many of us will suffer from extreme and often crippling anxiety. We may alienate ourselves from those we love through fear, shame and the dread of being misunderstood. We feel ‘changed’ almost overnight and those around us often find this hard to relate to. This is when many of us may turn to social media.

This can of course, be can be a wonderful tool to be used for making connections and learning about our conditions. But it can also be a quagmire of anxiety. You're reading this right now (THANKYOU) and no doubt found it via social media. Someone shared it on Facebook or Twitter, or you found it on another website, or via some other method I’m nowhere near cool enough to comprehend. That in itself is wonderful: the sheer instant connection.

But it's easy to get caught up in what we see on social media. This can be particularly true for those of us who struggle with chronic and/or mental illness. We spend a lot of time in our own heads and that can cause us to overthink and assume we are alone in our misery and fears. It can allow us to get emotionally lost in what we are ‘told’ our needs should be.

I’ve learnt (slowly) that love, and acceptance are all around me. I just have to work constantly on being open and willing to receive them. I have learnt that acts of love are found in listening to my fears and withholding immediate judgement. In being honest with me when I overreact or assume the worst. In using single cream instead of double because he knows he won’t be able to talk me out of eating mash potato and it’ll at least cause me a little less discomfort.

I am ‘sick’. ‘Unhealed’. And this often means I can find offence in places it doesn’t exist. Social media can exacerbate this so when I feel that anxiety rise I stay away from it. My ‘sick’ reality can be a terrifying place, so I have to remind myself that it’s only a part of me. The parts of myself I can work on ‘healing’ (without need for a medical degree) are what I put work into each day; my mind, my thought processes, ensuring my relationships are strong foundations to build on. When I work on these aspects of my life I can remind myself that often the actions of others have absolutely nothing to do with me. What I feel are my failings or faults are often entirely imagined. This makes any set-backs a little easier to bear.

Every day I get to wake up and ‘heal’ myself a little. So do you! If that isn’t an act of love I don’t know what is.

Kathleen NichollsComment
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