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All By Myself

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

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

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

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

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

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

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

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

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

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

Bowel movements and all.

Miss Conception 2018

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

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

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

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

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

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

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

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

4.     ‘You’re just being lazy…’

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

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

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

6.     ‘It’s all in your head…’

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

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

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

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

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

Kathleen NichollsComment
Body of Work

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

-Tummy rolls.

- Spots.

- Bad hair days.

- My double /triple/quadruple chins.

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

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

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

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

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

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

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

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

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

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

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

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

I Can't Believe We're Not Better

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

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

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

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

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

SO.

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

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

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

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

Believing patients is vital.

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

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

Free Fallin'

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

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

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

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

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

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

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

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

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

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

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

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

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

Patients Have Power

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

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

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

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

This is where clinical trials can step in.

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

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

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

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

We are more powerful than we often believe.

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

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

"Nothing will be normal Again"

Anyone who has been diagnosed with a chronic illness, or is close to someone who has, will be aware that there is a great deal of ‘adapting’ to be done following a diagnosis. This adaption to our illness/disability is wholly unique to the patient, and there is no time limit as to how long it may take. This fact alone can be a source of great frustration for both patient and partner/pal/parent, as we want, and expect, our lives to generally go back to ‘normal’ as soon as possible after. This is sadly an impossibility, as nothing will be ‘normal’ again; the diagnosis of a chronic condition is just the beginning.

Sounds a bit like the tagline for a weepy Hollywood blockbuster in waiting doesn’t it; “Nothing will be normal again”. Dramatic, stirring, startling. Five Stars. Ideally, we’ll have Jon Hamm playing my Doctor (and inevitable love interest) and me playing me. I don’t care that I have zero acting experience, I can emote as much as the next actor; I once lied to my boss that I was snuck in a snowdrift to get out of work and he bought it all despite my kettle clicking off and cat meowing in the background, so don’t you DARE underestimate my abilities.

This time limit on how quickly we adapt to a diagnosis is dependant on the condition too, of course; not just the individual. Add to that mix the idea if you have a disability that means you are suddenly physically less able than you once were, and you find yourself cracking open a whole new can of worms. We are not just coping with the mental adjustments that must be made to acknowledge a chronic condition, but now find ourselves stranded in the position of having to amend the way we physically and mentally, live. No small feat let me tell you. Well I don’t need to tell you, that’s kind of the whole point I guess, but I’ll do it anyway.

I commonly relate this adaption to chronic illness akin to that of grief. We grieve for our old lives, our old bodies, our potentially shortened futures. We feel deeply sad. This sadness, like that which we feel when grieving any loss, tends to come in waves. Some moments crashing and utterly overpowering, making it impossible to see a way beyond them. Some slower; calm, persistent and intense lapping waves that still startle and irritate us with their insistence on being felt.

Crying and letting these feelings out can often be a release. Like a once frozen pipe repaired, suddenly hot water comes crashing through and for a while things feel better. You feel. But that sense of release and perhaps relief is usually short lived. The pipe freezes again and you feel cold; isolated.  Naturally this innate sadness following a diagnosis is not across the board or even inevitable for every patient. I can’t of course speak for everyone’s reaction to a diagnosis either, but in my own experience a mixed reaction of shock, sadness and confusion, is decidedly more common than that of us skipping out of the doctor’s surgery clicking our heels together and sailing off into the sunset on that speed-boat you won on Bullseye in 1987.

Again, those are not the only two options, don’t panic because you can’t click your heels together. Practice makes perfect.

So, following on from this innate sadness that can come as a result of a damning diagnosis, then comes the emotional and (potential) mental health issues. I stress ‘potential’ here; not everyone diagnosed with a chronic illness goes on to have an issue with their mental health. But more and more these psychological issues are becoming more prevalent amongst those of us with poor physical health. We may find we will experience anxiety, depression, PTSD, trauma. Something many of us fail to grasp is that we don’t have to have experienced a horrific accident, a dreadful attack or a distressing bereavement in order to claim we have suffered trauma. Being advised we now have a life-long and often life-changing illness is traumatic in of itself. Not to mention the spells in hospital, the venture into the unknown, the dignity-stripping procedures and painful periods of recovery following surgery and treatment. Life with chronic illness is traumatic, and therefore we should feel no shame at attempting to manage the physiological effects we are laden with too.

These possible mental health issues do not always stem from the point of diagnosis. Issues such as depression and anxiety may crop up months, or even years down the line. We might notice the approach of these problems when we have had a long and persistent flare-up, following surgery recovery, or simply as a result of the utter exhaustion of living day to day with what is often essentially a disability. As patients and health professionals alike, if we are to aim to establish how to best remedy the issue of mental health stemming from, or being exacerbated by chronic illness, we firstly need to understand why mental illnesses and chronic physical conditions ‘co-exist’. Much like Melania and Donald Trump, we may understand the basics of their union, but many of the details are swept under the carpet and are frankly baffling.

I should of course clarify an important fact, before anyone starts stomping their feet, trolling me on the inter-web and sending me stool samples through the post. Despite loving all three of those things, it’s important you don’t assume I’m trying to imply that this issue of poor mental health is singularly a result of chronic illness. The idea of one stemming from the other doesn’t always follow one direction. Much like myself, after their tour manager filed a restraining order. It stands to reason that many chronic illness patients may already experience poor mental health, in one or many of its forms, and this in itself is generally considered a long-term condition on its own merits.

Living with mental illness can lead to its own physical disturbances alongside the mental.  Patients living with mental illness can also experience a range of physical symptoms, that will result either from the illness itself and/or as a consequence of treatment. Mental illnesses can commonly alter many functions such hormonal balances and sleep cycles, while many psychiatric/depression/anxiety medications may have side-effects ranging from daily irritations such as excessive perspiration to longer-term concerns such as heart problems. None of this should be taken lightly. We should feel as free to talk about these issues as we are with our physical issues. Everything begins with a conversation, so if we feel sad, or angry, or are just struggling to put one metaphorical foot in from of the other, we should talk to someone we trust. Like an incurable illness, we won’t be ‘fixed’ overnight, but we will be heading in the right direction; towards the problem and not Road Runner-ing away from them.

Sick and Tired

I am exhausted.

I live with multiple chronic illnesses, and thanks to that daily onslaught of ill-health, I also suffer from chronic fatigue. It’s no exaggeration when I tell you that I feel tired all the time. ALL. THE. TIME. I don’t say such a thing too often, because lord Bowie in heaven knows how BORING it is to hear people complain about how tired they are. In the scale of dull conversational topics, it comes directly above “Did I tell you about that dream I had last night?”.

At least once a day someone around me with perfect health will complain about how tired they are. Most of the time I can smile politely and internally raise my eyebrows, sometimes if I’m feeling particularly pleasant I might even enquire as to why. Essentially when I do though, I’m left feeling less understood than I do when my Scottish accent and I call an automated phone service. The answer I get will inevitably be something along the lines of ‘I stayed up late watching TV’, ‘I couldn’t sleep for my partner snoring’, or ‘I was making rampant love to you all night how have you forgotten that?’. So. What.

It’s not that I’m claiming only those of us with chronic illness are permitted to complain about exhaustion; obviously that’s not the case. Life isn’t a competition and there is certainly no winner in the tiredness top-trumps. But what can be very frustrating and (most likely unintentionally) insensitive, is when Joe Bloggs takes the ‘me too!’ approach to someone with a chronic condition expressing their feelings of exhaustion. The simple fact of the matter is; it’s not the same.

Not having gotten your full 8 hours uninterrupted sleep because someone was snoring, or you were making rampant love to someone for 3 minutes, isn’t the same as chronic fatigue. Exhaustion for those of us with chronic illness isn’t just a feeling of not having had ample rest. It’s an ache. A constant and relentless trudge through the day. Legs and arms of lead, walking through each day in a daze, brain-fog, confusion, trouble catching our breath, difficulty walking more than a few steps, simple tasks becoming mammoth feats of super-human strength. Everything is harder. For much longer than 3 minutes. Talking is hard. Maintaining concentration and expelling coherent sentences is like learning Japanese with ear plugs in.

All of this can sound overly dramatic when we attempt to describe it to those on the outside. They may nod in agreement or employ the age old sympathetic head tilt, but they will most likely doubt the severity of it. Which is frustrating, but at the same time only to be expected. Those without first hand experience will fall to the nearest similar situation they have to base it on; in these cases that will be that morning they woke up at 5 instead of 6, and we will kindly employ the sympathetic head tilt, all the while internally screaming.

Obviously, it stands to reason that with lack of sleep and continuous exhaustion comes fluctuations in our mood. We may become irritable, quick to argue or even cry, short-tempered, even anxious and depressed. Lack of rest means our already weary bodies are not getting any time to recover from the stresses and trials of the day. This overlaps into the next day, and the next, and by the end of the week we will feel fit for our coffin. When we are exhausted even on our days free from work or stress, it can be all the more infuriating; we will feel we are missing out. Napping is GREAT don’t even dare get me wrong there, but I often find myself avoiding it because there is so much more I feel I should or would prefer to be doing. Inevitably it only serves to leave me watching a film with my eyes barely open and falling asleep 10 minutes in at approximately 7pm.

Extreme exhaustion as an aside of chronic illness is another way in which we can begin to feel isolated. Avoiding activities through tiredness or having to climb the stairs to Slumber Town early and alone each night can put a strain on the closest of relationships. We naturally can’t expect those around us to follow suit in hibernating under the duvet as soon as our feet cross the threshold. Our friends and partners will also feel alone when we are exhausted. They are often only getting a little bit of us; the rest ironically needs to be awoken after extensive rest. When we are too tired to chat, eat together, enjoy activities together, or just ‘be’ together, it can cause a tear that takes an abundance of work to mend.

If, like me, you are incredibly lucky, you will have people around you who understand that exhaustion is real and debilitating. They wont judge or presume to understand; they will just listen and ask if and how they can help. The truth is, there really is little that can be done in living with chronic fatigue, but it’s important we maintain an open dialogue with those around us on how we are feeling and how things are affecting us. Poor physical health often = poor mental health, so sharing and keeping the lines of communication open with those you love is vital in helping to keep us feeling included, loved, and sane, when so often we feel anything but.

Kathleen NichollsComment
Big Talk

A common phrase used in the UK is ‘there’s a time and a place for that’. It’s usually employed when someone starts talking about something someone may consider ‘risqué’; sex, bodily functions, graphic descriptions of murder in Swedish crime drama. Picture the scene; we are sitting in our knitting circle, plaid skirts neatly tucked beneath us, enjoying a delicious. piping hot cup of tea, when someone around the circle suddenly says they undid an extra shirt button for their husband the night prior. Naturally, we all spit our tea out in the style of an ‘80’s spoof film and our tray of cucumber sandwiches instantly turn to mould. It’s NEITHER THE TIME NOR THE PLACE FOR FILTH.

So, with this precarious attitude towards openness in full swing, where does talking about chronic illness fit in? What’s the right time and place? I don’t think I’ve quite found it yet. Is it OK if I discuss my illness over dinner for example? Nope: I don’t want to hear that when I’m eating. OK, well can I talk about it when we’re out for a drink? Nope: I don’t want you bringing the mood down, we’re trying to let our hair down! Right, I guess maybe it’s OK if I briefly mention it at your Grandmother’s funeral then? Nope: this isn’t about YOU! You’ll spoil the cucumber sandwiches! AGAIN.

So it would seem we can’t talk about our conditions while we are eating, or drinking, or grieving over re-heated sausage rolls? When can I? You can see how much of a minefield this whole thing is. Or is it?

Well personally I’ve never bought into the idea that there is a certain ‘moment’ when it’s ‘appropriate’ for me to talk about a major and debilitating part of my life. Of course, I’m not immune to social cues and what the general population deems ‘acceptable’. I know, of course, that discussing my bowel movements at the bus-stop with your small child or talking about abdominal surgery with a visiting Nun is not ideal. But that doesn’t mean I agree with all these MADE-UP RULES. Nuns and small children have bowels too after all! Last time I checked anyway!

[clarification: I haven’t ‘checked’ any nuns or small children for bowels]

I tend to joke about my condition a lot, generally because it makes people around me feel more comfortable and helps to lighten some of the heavier feelings for me. Living/feeling/thinking about being ill 24/7 doesn’t leave much room for the fun-stuff in life, so I try to lighten the more stressful conversations where I can. The truth is, most of the people who have come across as offended, or uncomfortable when I discuss my illness don’t actually really how lucky they are. They get off lightly! Imagine being one of my friends, my partner or my family! The get both barrels of my illness-patter shot directly into them with NO MERCY. But they also understand that the state of my health is important. Me feeling ‘well’ and happy is important to them too. The two go hand in sweaty-palmed hand – if I’m well, I’m happier (naturally), but also, being able to talk about my health without fear of judgement, reprisals or shame is vital.

Those without chronic illness, or without a loved one who suffers an incurable condition will perhaps struggle to adapt to those of us wishing to be more open and transparent about our sickly lives. I know the natural urge here is to bellow something like “Well it’s THEIR problem not mine!” and stick up two GirlPower fingers at no one in particular. But that doesn’t actually solve anything. I know I am well within my rights to talk about my condition when I choose, but I also know that some people find it difficult to hear. So, I’ll tailor my conversations to suit my surroundings, like some sort of chronically ill chameleon. Don’t get me wrong, that doesn’t mean I shy away from speaking out - if I feel misunderstood, or am shamed in any way, or my words are misinterpreted, or assumptions are made about my life, I will jump into those murky conversational depths with both feet.  

I have no shame over my illness or my somewhat damaged and decayed body. I love my body and I love myself. I love that I am loved for me – diseased bits and all. This point has taken me a long time to get to, and it’s still like walking on a self-love tightrope on a daily basis, but I’m happy with my attitude towards my illness. No one has the right to shut me, or any of you up, or decide when or what we should say about our illness. So talk openly when you need to, talk to those you trust and don’t ask Nuns to check if they have workable bowels.

Kathleen NichollsComment
Con-Cure Your Fears

Aside from random men on the internet kindly telling me that my face is not to their liking, or that I should consider showing more flesh to 'get ahead' (whatever that means); one of the most common types of spam I receive is from strangers providing advice on how I can easily 'cure' my (incurable) illness.

Generally I try to humorously mock these type of inane emails or posts, for the sake of my own sanity; but in actuality, this type of thing is incredibly damaging, and in some cases, even dangerous for those of use with chronic illness.

Being drawn in by promises of achieving remission, or even better; a complete annihilation of a disease, is of course a delightful idea. All of us want to be 'well', and all of us would ideally like that to happen with as little effort on our part as possible. But, when we are met with alleged doctors or health professionals who claim to have the secret key to unlocking our longed-for and as yet inaccessible cure, it is undoubtedly alluring. When we are at our lowest ebb, we crave any form of reassurance that things will get better. Think back to how you felt at series 3 of Breaking Bad.

On an almost daily basis I receive messages from strangers claiming to have the answers to all my medical problems. They will happily tell me (for a small fee of course; I wouldn't waste these academics valued time!) how I can easily and quickly cure my ills. This will be through adopting a special diet, by way of eating tree-bark or something equally bizarre, through simply 'thinking positively, or by paying them thousands of pounds to indoctrinate me in a Wellness Centre' or something that sounds just as sinister.

It shouldn't get to the point where your tongue is bleeding profusely from excessive tree-licking that you decide maybe all of this is a BAD IDEA. When we are lured by promises of quick fixes a good general rule is to run in the opposite direction as fast as you can. There are no 'quick fixes' in life; if it seems too good to be true, it probably is.

Now you might be reading all of this thinking that anyone who has fallen for any of this would have to be the Chairman of the Dumb-Dums Association. But again I hark back to the desperation and vulnerability so many of us feel when we are seriously ill. Grasping for a possibility things will be easier isn't stupidity it's human nature, and it's symptomatic of a life spent in pain and fear.

Of course I don't blame any patient who falls for any of this unsubstantiated hokum; the fault lies with the crooks who sell it. Those who attempt to make money from the vulnerable by making promises they can't begin to keep are lower than a worms bra strap.

Selling a lie to those in need is despicable and abhorrent.

So please, don't be fooled by internet 'doctors' who promise you the Earth and/or a yearly subscription to Tree Bark Monthly; the only thing they are healinh is their own bank balance.