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Build It And They Will Come

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

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

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

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

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

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

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

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

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

-      Not making our own emotions/opinions a priority

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

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

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

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

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

Turn and Face the Strange

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

Reader, I didn't.

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

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

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

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

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

Lame & Fortune

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Win gold at looking after number 1. 


Kathleen NichollsComment
Some Kind of Wonderful

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

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

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

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

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

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

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

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

Kathleen NichollsComment
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