I'm not an expert on Chronic Illness. I'm not a doctor, a therapist or a medical professional of any kind. What I am is someone who lives with a plethora of crappy conditions that can make day-to-day living incredibly shit. My aim is to share these experiences with you in the hope that you may get some comfort, a few giggles or maybe some inspiration. I hope it does. Sending gentle hugs xx
You may or may not be familiar with the stages of grief model that is often referenced by counsellors and popular culture. There are a few versions of this (including a very funny Game of Thrones version) but the most cited one features five stages. These are: Denial, Anger, Bargaining, Depression & Acceptance. You may not think to apply this sort of thinking to your chronic illness journey, but I assure you that it is incredibly relevant. I’ve adapted it slightly to fit the struggle with illness and it’s something that I will refer to throughout the book. See if you recognise yourself in any of these examples:
Omg! I’ve been (finally) diagnosed with something! Crap…I have no idea what to do/say/think. Everyone is asking me how I feel and I have no bloody idea. How am I supposed to feel?! I’ve never done this before!
I don’t accept this. It can’t be happening. They’ve got it wrong. Bloody doctors! There’s nothing wrong with me, I’m just tired/hungry/low in potassium/the moon is in Jupiter’s orbit and it’s thrown my third chakra out of whack etc.
This isn’t fucking fair! How the bollocking buggery am I supposed to cope with this? Piss off with your stupid advice, you have no idea how I feel! Oh yeah, I’m sure you have loads of problems with your perfect life and healthy body—fuck you! Back away from me nice and slowly and you might leave with all your fingers intact.
I miss me. I miss the old me, the healthy me, the better me. I hate this new person-I don’t understand how to live this way. I want to go back to my old life when things didn’t hurt and having a shower didn’t cause me to lay down for half an hour because I’m so bloody tired!
If I have a healthy diet and get exactly eight hours of sleep a night then I won’t get ill. I won’t take these medications that the doctor has prescribed me because I hate the side effects but it’s ok because I didn’t take them yesterday and I felt alright then.
I have a chronic illness. I’m aware of my limitations most of the time. But it still gets me down. I guess acceptance doesn’t always mean that I’ll feel ok with it.
I don’t feel overly well and that’s ok. I’m going to go home, lay on the sofa and watch back-to-back Disney films whilst consuming an entire tub of Ben & Jerry’s Chunky Monkey ice cream. I’m not going to do the dishes because I don’t have the energy for that today and that’s ok. Maybe tomorrow will be a better day.
Sound familiar? It’s important to note that these stages aren’t linear. You don’t start at 1 and end up at 7. You dip in and out of each stage, sometimes on an hourly basis. It’s also quite possible that you only recognise yourself in some of the stages. I know that anger is a stage I fall back on A LOT when I fall out of kilter (my poor fiancé!) but bargaining is something that I don’t tend to do very often. I’m getting better at self-soothing, but loss is the most painful for me. That’s because chronic illness is a form of bereavement.
Today might be a good ‘acceptance’ type day. You might have embraced your inner chronic illness warrior and be living within your limitations. You might have embraced honest and difficult conversations with your friends to the tune of: “I don’t think going to see a late-night film is going to work for me tonight. I have to be up early in the morning and I need to charge my batteries for the day ahead. I’d love to have coffee at lunch time though.” Wow. Get you, you little star. You’re firing on all cylinders and protecting yourself in the bargain. However, like all emotional states, each one of the stages are transient. They don’t last. They can’t. The pendulum of life will inevitably swing between the stages and the best that you can hope for is that you don’t get whiplash in the process. The key thing to remember is to not get stuck in one stage for too long, even the so-called positive stages. Self-soothing is fantastic; it helps you to be your own comforting parent whilst you’re giving yourself permission to simply ‘be’. However, stay in self-soothing mode for too long and you’ll fester on the sofa consuming Tesco’s supply of Dairy Milk whilst crying and singing ‘Under the Sea’ through rotten teeth. There must be a time when you re-embrace your semblance of normal and challenge yourself to achieve new things. These may lead to failure; this may lead to feeling angry or a sense of loss as you are unable to do what you used to be able to. And then you might need to self-soothe until you’re ready to re-join the world. And thus the cycle starts again. But RECOGNISING each stage and being kind to yourself is at the epicentre of successfully living with a chronic illness.
Well, don’t I sound like I’ve got my shit together! Here’s me giving out this advice, sounding like I’m the big ‘I am’ of the chronic illness world. If you’re having a crap day, I must sound like the ‘Positive Peter’ of the previous blog and, for that, I apologise. I’m afraid the only way that I can give you this advice is because I have well and truly festered in each and every stage and watched my life surreptitiously crumbling around my feet. I have cuddled up in a blanket of loss and refused to come out. I have spent months breathing fire and pushing everyone away in a flaming inferno of anger. And my months of denial have resulted in some very hairy and life-threatening admissions to hospital as I have pushed myself to the limit of what my body is able to do. None of this was fun and none of it was healthy. Life with a chronic illness is a massive learning curve of emotional shit on top of the physical shit that plagues us every day, and there are huge peaks and troughs along the way. Sometimes, just saying: “I’m having an angry moment and I need to be left alone. I don’t want to say anything that I don’t mean so I’m going to take myself away and deal with it” is enough for you and your loved ones to recognise your emotional stage and act accordingly. It sounds disgustingly simple, doesn’t it? The truth is, having the same self-awareness of your emotional states as you do to your physical states is simple. It’s just not easy. Start by showing your loved ones/friends/significant other/siblings the 7 emotional states. Explain if one particular stage rings true for you and what that might look like. And then, when you find yourself in the grips of one, you should be able to say ‘I’m struggling with denial/bargaining etc today’ and, hopefully, that should be enough to explain your actions and deal with the fallout a bit better. It’ll never be easy, but the goal is to prevent a Hiroshima- style mushroom shit cloud from hitting your family and engulfing your life. Small steps you wonderful warriors. Small but steady.
Guilt. It’s a horrendous emotion. Anyone who has ever
laboured like Atlas under this monumental burden knows that it can drain the
life’s blood out of even the most stoic. However, guilt seems to have a
particular penchant for chronic illness. It’s like it gets an
all-you-can-eat-buffet feeding from the insecurities that plague our medical
tumults. What do I feel guilty about? Let me count the ways…
Financial/ work guilt:
I had a severe case of this this week and it completely
knocked me sideways. It started one morning when my fiancé came downstairs
suited and booted preparing for a big meeting he had in London. He’d been up until ungodly hours the night
before doing paperwork and was stressed. I hate it when loved ones are stressed
because I immediately want to do something
to ease their worries. Now, stress is a funny thing in a romantic relationship.
The way I see it, if a partner is stressed, you have two options (well, three
if you choose to completely ignore them). You can a) Remove some of the stress
by taking on other jobs—cooking, cleaning, bonsai tree care etc.—thus easing
the pressure on your other half’s furrowed brow, or you can b) share and
empathise with the stress because you’re equally as burnt out running a
multi-million pound conglomerate and you can bond over the hardships of
My problem over the last couple of weeks is that I could do
neither of those things. I haven’t been able to go to work because a particularly
nasty flare has been royally kicking my arse and I simply felt too ill. What I
wanted to say was “Ah babe, I’m so sorry you’re stressed. I completely know how
you feel as I’ve had a horrendous day too: Mr Rogers got a spontaneous erection
whilst I was washing him and then proceeded to throw up all over Mr Stevens in
the next bed. How about I do dinner tonight and you can do it tomorrow night?” But
I couldn’t regale him with tales of vomiting patients or paperwork that would
never cease, and I couldn’t take on more around the house because I could
barely function. In fact, all I felt able to do is sit down and rest. But if
that’s all I could do, what’s my role in this relationship? What am I
contributing? In my head, this was what I must have looked like:
Whilst my fiancé looked like this:
It’s not a great picture is it? I decided not to lay down
and rest. Instead, I struggled on, slowly making dinner with spontaneous grunts
of ‘ouch’ and ‘ooh’ closely resembling a female tennis player. I thought this
might be helpful, but this just seemed to irritate him more and I got the
familiar fix-it Fred shout from the other room: “Just leave it and I’ll come
and do it in a minute! Just sit down!” Brilliant. So, I come and sit down
whilst he manically finishes his work and then struggles to do dinner, waiting
on me like some kind of contorted version of Thunderbird’s Lady Penelope? That
to me just seems like an invitation for an entire shit blizzard of guilt, and,
at that moment, I didn’t think I could cope with that. I couldn’t leave him to
struggle with the financial burden of running the house (because, let’s face
it, even if I was at work I don’t make as much money as him because I can’t
hold down a full-time, well-paid job because my body hates me) and do the domestic chores and leave him to run his own business.
That’s just a one-way ticket to Low Self-Esteemville.
When the balance of our relationship shifts in this way, I
don’t even feel like I can tell him that I’m tired. Even though I’m thoroughly
exhausted, my brain still rationalises that I can’t be as tired as him. After
all, what have I done all day? I walked the dog. I tidied. I showered. And even
though I know that there’s a reason why one of the most famous Memes
circulating the internet is “You don’t know what fatigue is until you’ve had to
rest after having a shower” how can I voice this to him? “Oh yes darling, I’m
sure you’re exhausted after driving to Southampton all week whilst running your
own business, but I’ve showered today!” Even writing this sentence seems
ridiculous. I feel like I need a justifiable
reason to be tired. Like if I had been at work all day I’d be perfectly ok
to say that I was tired. Everyone understands work tiredness. It’s socially
acceptable. The tiredness that comes from fighting an invisible internal battle
is less acceptable.
I know this is an issue that many of us struggle with. I
know that this is one of the areas that I can’t cope with when I’m flaring. I
hate feeling like a useless burden. Underneath all of this is a need to explain
and rationalise my fatigue. Like I have to compete. Don’t get me wrong, my
fiancé never asks me to go above and beyond to prove myself. He never doubts my
struggles. But, somehow, this just makes it worse. I want to help; I want to contribute
to our relationship like ‘normal’ people do. But isn’t this the issue? I’m not normal (I’ll pause for laughter from
family and friends here). I’m not being self-deprecating, but the fact remains
that I have different limitations to my fiancé because I’m not healthy. I can’t push
myself to the limit and then come home and dash away with a smoothing iron. When
I’m having a good day, I’m pretty good at recognising those limitations and,
unless I’m being particularly stubborn, I normally adhere to them. But on a bad
During my time in counselling, this issue of normality came up a lot. It was a word
that always used to pop up if I was having a bad time or a particularly awful
flare. We would discuss my longing to be normal
and I would come up with a list of qualities that ALL ‘normal’ (i.e. not
sick) people have. By the end of the list, I had turned the majority of the
population into superheroes, able to do anything and everything. This was what I should be doing. Everyone
else manages to work, maintain a relationship, exercise, raise children, have
well-behaved pets and a vibrant and exciting social life. And they do ALL of
these things ALL of the time. They don’t struggle or complain. And then my
counsellor would ask me how many people I knew fitted this description. “All of
them!” I would reply. She’d look at my quizzically and I’d laugh. Because,
realistically, I didn’t know anyone that didn’t struggle, irrespective of
whether they were healthy or not. So why, when we’re flaring, do we think that
everyone in the world is managing perfectly whilst we’re sitting in a puddle of
our own juices feeling exhausted at the idea of getting a drink of water?
I think it comes back to the notion of grieving for our pre-illness self, and only being able to see the limitations and restrictions of our current lives. We forget to see any positives because, in our head, there aren’t any. I think this is where the notion of self-care comes in. The question that I was constantly told to ask myself in counselling is “What do you
need?” If I look back at the relationship scenario at the beginning of
this segment, I feel like I may have left an option out. What I needed was to
rest. To lay down and sleep. So how could I have done that whilst still
maintaining a relationship? Perhaps the notion of communication is about to
raise its ugly head again. Couldn’t I have told him that I was sorry he was
stressed, that I was grateful for what he did and that I was always here to
listen to him? Couldn’t I have said that I didn’t have the energy to cook
dinner but that there was a pizza in the fridge that I could put on for him
before I went to bed? Would it have been so hard to explain my feelings without
the need to compete in the ‘Who’s more tired’ Olympics?
I spoke to a fellow chronic illness sufferer about this and
she told me several strategies that she uses with her husband to overcome these
situations. When she was having an ok day, she sat down with her husband to
explain to him how it felt when she was poorly. She told him all about what she
could and couldn’t do, and what he could do to help in those situations. When she
was poorly, they didn’t need to have a conversation about it. He knew what she
was going through, and he knew exactly what to do. It got me thinking, so I’ve
compiled a list of suggested strategies that might help if you find yourself in
Keep a couple of basic, chuck-in-the-oven meals
in the freezer to use when you’re flaring. That way, you don’t even have to
think about cooking when your body is on strike
Talk to your partner about how you feel when you’re
flaring but do it when you’re feeling well and he/she is receptive. Make a list
of what he/she can do to help you. Leave it somewhere that’s accessible
Have a non-verbal way of explaining how you’re
feeling if you’re really struggling. This might include post-its, a text, a thumbs-down
emoji or maybe a fridge magnet. There’s nothing worse than trying to articulate
feelings when you feel like shit.
Remember that being in a partnership is as much
about emotional support as it is about doing
things. If your partner is struggling but you’re not able to do anything, give them a cuddle or send
them a text (even if you’re in the same room). Let them know you’re still there
Take care of yourself. You can’t fight a flare
up so take stock of what you need and do it. You’d be amazed at how much
quicker you bounce back if you take some time for self-care.
This won’t be my last post on guilt. It’s a right little
bastard that features in so many aspects of life with chronic illness. However,
if you take one thing away from this post, please be reassured that feeling
guilty is COMPLETELY NORMAL. Give yourself some compassion, rest and then
bounce back to be the bloody awesome person you are.
When I was first diagnosed (after I crawled out from under the rock of
denial I had thrown myself under) the word ‘support’ featured a lot in my vocabulary.
I wanted support, I wasn’t getting support, I needed support, I didn’t need
support…I yo-yoed between demanding people’s unwavering support, intense
irritation when I didn’t get the type of support I wanted and seething anger
that people assumed I needed support because ‘I’m perfectly capable thank you
very much, I’m not a fucking invalid’.
At the beginning, if I dropped something on the floor that was just out
of my reach and no one magically came to my aid like a knight on a multi-coloured
unicorn I felt abandoned, alone and bitter. Didn’t people know I needed support
just to function? Where was the help? Selfish, able-bodied bastards. However (and
this is where my chronic illness really screwed with my head) if they DID
appear out of the ether running in a Baywatch fashion to come to my aid I was
outraged. What did they think they were doing? Do I look like I can’t do anything
for myself?! Funnily enough, I don’t remember a lot of ‘support’ during this
The problem was that I had no idea what I needed. I wanted to feel loved
but not mollycoddled, cared ABOUT but not cared FOR, ‘normal’ but with my new
and bizarre medical needs considered. I’m sure you, my clever readers, have
worked out that the only way to get this type of support was to ask for it
(eurgh, the horror of communication) but I’m afraid I didn’t figure this out
until much later in my diagnostic journey. What I did realise though, was that
the support that people in my life were offering fell roughly into four
The Positive, perky
The Smothering, soothing
The Woeful, winging
The Fixable, fine
Spoiler alert: None of the extremes featured above are a) helpful or b)
entirely without exaggeration. They are, however, a snapshot of the sort of
support you might be getting right now and why you feel so irritated with it
you could just punch loved ones in the face.
The Positive, perky Peters:
I HATE positivity when I’m flaring. It’s like veal to a vegan. There is
nothing worse when you’re having a bad day of being reminded how beautiful the
day is and how smiling is the best medicine. Fuck the day and fuck smiling. Because
at that moment I can’t smile. Pain is literally searing through my body and the
most I’m managing is talking and breathing, so the notion of looking out of the
window to appreciate the sound of beautiful birdsong is nonsensical and, to be
honest, a little insulting. The insanely positive folk clearly have no idea how
encumbered those of us with chronic illness are at that moment with pain/fatigue/depression/anxiety/every-single-body-part-deciding-to-rebel-at-the-same-bloody-moment.
HOWEVER, now that I’ve finished channelling my angry, flaring self, let
me take a moment to explain why those positive Peters are useful even if
sometimes they need toning down a bit. Positivity is needed during a life with
chronic illness. The alternative is the woeful Wendys of the world and, as we
shall see in a moment, they are no more help than a chocolate fireguard. The
physical symptoms of an illness that ravages your body are one thing. They are
real and no amount of ‘kumbaya-ing’ is going to change that. However, there is
also the mental side of chronic illness
which is silent killer. You think you’re fighting Batman and then Robin comes
and kicks you in the head from behind. The depression, anxiety and low self-esteem
that can accompany a bad hour/day/week/year are just as debilitating as the
physical stuff. So sometimes a little bit of positivity is a good thing. It helps
to bring reality into a dark world of pain. And the beauty of positive Peters
is that they really DO want to help. They’re trying to remind you that the
world isn’t the way that you’re seeing it right now, but, because they don’t understand
what you’re going through, they resort to reminders of laughter being the best
medicine and end up getting themselves punched in the face. So here are my
suggestions of how to get the most out of those positive Peters in your life:
Rather than threatening to stick a singing bird up their proverbial, explain
to them that, right now, you don’t want to be positive. You’re struggling and
you can’t cope with anything other than the fun tricks that your body is
playing on you right now. However, ask them to continue to check in on you and
not give up on you: you’ll pull yourself out of the hole at some point and then
you’d be more than happy to have them over and listen to the melodious song of
the Lesser Whitethroat Warbler together.
The Smothering, soothing Susans:
At the beginning, these folks were like a warm hug. The soothing Susans of
my life wouldn’t let me do anything without murmurs of concern for my health, mental
wellbeing and general Ok-ness. They would rush to every whim, worry and wobble
that I had, and I was never alone whilst they were in my company. Nothing was
too much trouble, and I really felt like someone was taking me under their wing
so that I’d never have to struggle again. However, after a while, the ‘soothing’
bit of their namesake fell by the wayside and the ‘smothering’ bit took over
with a vengeance. On days when I was feeling better, I wanted to go for a walk,
or go to a party or even (heaven forbid) make my own cup of tea. I wanted to LIVE
on the good days because I knew that the bad days were just around the corner
and I wanted to make the most of feeling like a semi-functioning human being. The
more adept I got at looking after myself and my conditions the more I wanted to
manage MYSELF according to my limitations. I needed to try different
activities, and, more than that, I needed to fail. How else was I supposed to
know what I could and couldn’t do? But the harder I tried to push away from smothering
Susans, the harder they held on.
However, a chance conversation with a particular smothering Susan in my
life made me see myself as she did. What we forget is that the Susans in our lives
have seen us at our worst. They’ve been to the appointments, the medication
reviews and the worse recesses of hell with us. They’ve been the ones to sit at
our bedside in some dingy hospital ward waiting nervously for us to wake up
from our seventh operation. They’ve held our hands tightly as we undertook
painful injections, suffered under horrendous side-effects of new medications and
collapsed under the weight of the shit storm that is our illnesses. And they
don’t forget those images of us bent over the toilet or screaming in agony.
They can’t. It’s too painful. So when we try and move on like Bambi taking our
first steps they want to be under us with a safety net. And that’s not a bad
thing. It’s actually a sign of tremendous love and affection, even if sometimes
we do want to scream “I CAN DO IT MYSELF!” So here’s how I deal with my
favourite person in the world who happens to be a smothering Susan:
I remind her that I’m safe, that I’m taking every precaution to keep myself healthy even if I’m planning a trip to climb Kilimanjaro. I remind her that I can look after myself and go through scenarios of what I would do should I become dangerously poorly. And when I fail, I show her that I can pick myself up, pop a pill, have a cry and try it all over again. I keep her in the loop with my health so that she doesn’t imagine the worst and try to ambush me with rolls of bubble wrap. Most importantly, I remind her that there is a time for cotton wool, when she can come into her own and when I truly need her. But that isn’t right now because I’m a functioning adult and quite capable of making my own cup of tea.
The Woeful, winging Wendys
It might not seem like these folks are capable of support, but they have
their own unique way of being there when the shit has hit the medical fan. If you’re
having a bad day, Woeful Wendys will give you justification. They’ll say things
like “Oh my goodness, I’m so sorry you’re going through this AGAIN. If I had to
deal with what you’ve had to deal with I think I’d kill myself.” Huh, you think
at the beginning, this person really knows what I’m going through and
understands the trauma of my life. And she hasn’t once told me to be positive. Thank
goodness for Wendy! But before you know it, the sympathetic platitudes take a darker
turn. “It must be so awful to be in your 30s and still not married because your
illness has stripped everything away from you and left you in a state of perpetual
misery. I’m so sad for you.” Cheers. All of a sudden, the thoughts you’ve had on
your worst day begin to be voiced by an external figure and they’re no longer
comforting. Even if you try to put a positive spin on their dingy outlook you
won’t succeed. You might point out that you’re in a long-term relationship
thank you very much and that you’re sure marriage is on the cards eventually. Forget
it: you’re dealing with a melodramatic expert. “Oh I’m sure it’ll happen eventually, but do you ever worry that your
partner regards you more as a patient than a girlfriend? I feel so sorry for both
of you; I’m sure that this isn’t the life that either of you wanted.” Just pass me the razor now…
So how do Wendy’s help? What’s stopping you from blocking them on every
channel and instantly emigrating to Azerbaijan? Well, as already discussed, the
initial justification that they provide is quite nice. It’s good to have your
struggles recognised and feel validated in the fact that today you’re doing Netflix
and Ill. But they also have a subtler aspect of support, because they voice the
worst possible outcomes in your life. Wendy’s present the scenarios that you
never want to see materialised. They give you something to push against. If they were you, they’d want to drown their medical dramas in a bottle of Bourbon
but they’re NOT you. You’re not going down that route because, damn it, you’re stronger
than that. The fact that you’re not a raging alcoholic perpetually
contemplating social isolation proves just how strong you are. You’re a medical
Rockstar! How to deal with Wendy’s? It’s simple:
Take their justification. Ignore their bollocks. Use their negativity to
make you feel great about your life choices.
The Fixable, fine Freds
I’ve deliberately left these little bastards until last. They mean so
well, they’re always on hand to offer support and solutions and they come
across as so bloody sensible it’s infuriating. I know. I live with one. Freds
are practical and so is their support. In pain? Take a pill. Tired? Go to bed. Worried
about a new symptom? Go to the doctors. Simple! How wonderfully fucking magical
to have someone supporting you who has all the answers to the problems of the
universe. Freds could solve the Middle East crisis in half an hour over the
telephone with a bottle of Budweiser without even breaking a sweat. And if you
don’t take their support? They get pissed off, frustrated and cranky. “You’re
tired! Go to bed! Leave the housework/feeding the kids/caring for the animals/personal
hygiene/job/life in general. If you went to bed like I’d suggested you’d be absolutely
fine!” No, I wouldn’t. Because I’m not just tired. I’m exhausted. I’m tired down to my very core because my body is
fighting a battle that I can’t win. And going to bed is neither practical nor
However, the underlying cause of Fred’s solution-seeking support is a
feeling of being helpless. They’re powerless to do anything about the perpetual
pain, the constant fatigue and the never-ending cycle of diagnoses. Coming up
with simple solutions makes them feel like they have an answer and that they
could be contributing to making you feel slightly more human. The reason for
the frustration is that nothing works. Because the notion of chronic illness is
just that: it’s chronic. It’s not going anywhere, and neither are its debilitating
symptoms. And it’s a hard pill to swallow. Underneath the practicalities of ‘everything
is fine and solvable’ is a lack of acceptance. But that’s not your issue, it’s
theirs. You can’t force someone to accept that you’re not going to get ‘better’
but you can help them to feel more in control. How do you deal with ‘everything
will be fine’ Freds?
Point out times when you just need sympathy. You don’t need solutions to
the problem of being tired, you just want them to give you a cuddle and tell
you that they’re sorry you’re going through this. Tell them that it will really
help you to have support in that moment, far more than the simple solution of
just going to bed.
Give them a role. When they’re barking solutions at you like a frantic
dictator tell them what would make a difference to you in that moment. Yes, you’re
in pain, and yes you could take a pill, but what would really help is if they
cooked dinner tonight so that you could go and have a bath.
Use their practicality. Some of their solutions are actually really
helpful. You might be in pain because you forgot to take your pills this
morning. Thanks Fred! Praise them when they help, ignore them when they don’t.
I hope you’ve found this little bit on support helpful. I know it’s a
bit tongue-in-cheek but the overriding principle is that people aren’t robots.
They can’t be there for you 100%, especially if you don’t tell them what you
need. You are deserving of support, but you might have to be selective as to who
is in your entourage of care. And remember, you have a CHOICE of who to take
support from. Don’t take it if it’s not helpful, and lap it up if it is.
This is one of the hardest aspects of having an illness that
royally fucks up your life. You don’t feel like YOU anymore. You don’t really
know who you feel like, but you no longer recognise the person that stares back
at you in the mirror. Maybe you don’t look like the you of healthy times past.
Or maybe you can no longer do the things that once defined you in a healthier
era. Whatever the reason, your reflection and sense of self suddenly pack up
and go on an all-expenses paid cruise leaving you to house-sit in the shell of
a body you no longer know. I don’t remember ever valuing my health; it was
something that I just took for granted, like an old rug that is no longer
noticed. But once it was stripped away the wave of grief that rolled over me
was almost too much to bear. It’s like being forced to remember all the things
you USED to do, the abilities you USED to have and the opportunities you USED
to grab before chronic illness took hold of you and wouldn’t let go. You’re
left with a void that you don’t know how to fill, and it is one of the
loneliest and scariest holes that you’ll ever go down. I remember thinking ‘Who
am I?’ ‘Apart from my illness, what defines me now?’
There’s no advice on grieving for the person you used to be.
When I was first diagnosed, I spent the first year desperately trying to get
back to ‘pre-illness me’. But the more I tried, the further away this reality
became. It was like I had ended a relationship with myself, and thus this
problem is what I began to think of as the ‘break-up dilemma’. Cast yourself
back to a time when you ended a relationship with someone. Maybe it was because
their ‘get up and go’ got up and left. Or perhaps their breath was enough to
level a small village, or they had a better relationship with your Visa card
than they did with you. At the time, you know the break up was the right thing
to do. However, after a long hard day at work in a moment of weakness or a
particularly heavy dalliance with alcohol you look back and remember him or her
with a shimmery rose-coloured glow around them. You remember them looking like
Brad Pitt and smelling like a Hugo Boss advert. You have an IDEALISED version
of them, and you miss them like chocolate cake on the first day of a diet.
Well, that’s what your brain does with your pre-illness self. You convince
yourself that you used to be some kind of spanxless superhero, capable of doing
and being anything. You remember yourself being fitter, more capable, more
sociable and just generally all around drop dead gorgeous.
And the reason you remember yourself like this? Because all you can see is what you can’t do now. So your not-so-helpful brain twists your old you into the opposite of everything you are now. According to my brain at that time, my pre-illness self was:
Impossible high heels, pencil skirt and power shirt
Mocha Frappuchino grabbed on the run between work and gym sessions
Cordon Bleu chef whilst doing the ironing and answering emails on a swanky new blackberry.
Nipping home to change into some skinny jeans before going out to a fabulous new bar surrounded by all of my friends.
Amazing eh? Wouldn’t you want to know this stupendous superhero that lit up a room whenever she ran into it? (For some reason, my brain always pictures pre-illness me running everywhere). Now I’ve never worn skinny jeans in my life. I’ve never liked going to the gym and I’m not sure that I even know any fabulous bars let alone frequent them. Nevertheless, this was the person I remembered, grieved and mourned for. She had all of the abilities that I felt that I’d lost, and it left me looking in the mirror seeing this person:
Bottle of pills and prescription
Dowdy, holey clothes
Alone, miserable and invisible.
See the problem? Now obviously I’m exaggerating slightly (I’m prone to do this) but I hope the general point is there. Chronic illness can make you feel like your identity is stripped away from you and that your qualities and personality are somehow intertwined with your ABILITIES. But they’re not. Just because you are no longer able to abseil down a building, it doesn’t mean that you’re not you: the characteristics that enabled you to face death-defying heights are still in place. If you were a social butterfly pre-diagnosis, chances are you’re funny, bubbly, caring and interesting and those qualities haven’t disappeared with the onset of illness.
Strangely, when I asked my friends how they remembered me in healthier times they didn’t mention this skinny-jeans-wearing- coffee-drinking gym-goer. The activities that they associated me with were much more mundane, and, to my surprise, much more sedentary. It turns out that I didn’t run everywhere and that I used to love curling up with a good book as much as I do now. Don’t get me wrong, there were some activities that I used to do before that I am unable to do now. My career in teaching, for example, ended abruptly with the onset of my illness. As much as this was a cause of grief initially (and still is on days when I’m feeling particularly poorly) I was reminded by someone very dear to me that the qualities that enabled me to teach in the first place—communication, passion and an occasional attempt at humour—were still lurking underneath diagnoses, labels and pills. Your wonderful qualities may need to be used in a slightly different way, but the point remains that you, my dear reader, are still YOU. You don’t need to ‘find yourself’. You’re not a purse that is mislaid and can only be found again by rummaging frantically in a messy bag. You’re not lost, you’re just buried under low self-esteem, cultural stereotypes and inaccurate conclusions that you’ve drawn about yourself and your new ‘ill’ persona. When people say you need to ‘find yourself’ I choose to believe that you need to rediscover your true self, the values and opinions that you hold dear that existed before you started this battle with chronic illness and would exist even if a miraculous cure was found tomorrow. The jigsaw pieces that form to make up your wonderfully unique personality, the qualities that would make someone else say ‘Oh that’s so you!’ You’re still there, you’re still you, and you’re so worth it.
“The question is not how to get cured, but how to live.”
― Joseph Conrad
They say write what you know. Draw on your own experience. Write what’s real to you, what’s emotional to you and what occupies your every waking thought. I can’t tell you how much I wish my knowledge was about architecture, or the favourite holiday haunts of the rich and famous. Unfortunately, the experience that I have to offer is contained within the ugly pitfalls, deep recesses and general shit storm of despair that precedes and accompanies chronic illness. In case you feel the need to examine my credentials for writing this, I was diagnosed with several chronic illnesses a number of years ago. And let me tell you, my life changed quicker than the fashions in Primark. A qualified teacher, I was busy climbing the ladder of educational success when my first autoimmune disease struck. Unwilling to adapt, change or slow down, I decided to ignore my diagnosis and battle on as I’d done before. I was the definition of insanity: doing the same thing over and over again and expecting a different result. Eventually, after three more diseases decided to join the illness bandwagon, I was forced to give up teaching and re-evaluate my life. I now work part time when I can at the local hospital and draw portraits in my spare time. I don’t think I’ve managed to ‘cope’ with my illnesses; I don’t think I ever will. But, for now, I think I’m on the road to adapting and accepting my limitations. So here’s my introduction: My name’s Lucy and I’m chronically hopeful 😊
This blog isn’t a self-help portal. It isn’t a gospel guide or a one-size-fits-all-cure-all. I have no breathtakingly wonderful epiphanies to impart into your eager ear. Now, it might sound like I’m deliberately poo-pooing my own work but hear me out. Assuming you’ve not been drawn to this blog because of the snazzy colours (beautiful aren’t they!) the chances are that your attraction to this work is because either you’re suffering (my condolences, that sucks) or because someone you know is suffering (equally worthy of condolences).
When I was first diagnosed, I spent hours scrolling through the internet, browsing through the bookshelves and endlessly searching on Amazon to find some literature to tell me how I was supposed to live with this life-changing shit-bomb that had been dropped on me from rather unforgiving heights. The help that the doctors had given me, tended, in my experience, to stop at the physical symptoms; the drugs and their side effects were covered in Chapter One of my chronic illness journey. Looking back, that was the easy bit. It was the gaping hole of uncertainty that followed that kicked me repeatedly, the ‘now what?’ portion of life after diagnosis. I typed in the names of my illnesses looking desperately for some advice on daily living. I found books on symptoms, I found books on diet, I found books on meditation and breathing and yoga and positive-poxy-thinking. The problem was that I knew my symptoms (hello! I live with them!) and I had already been given leaflets on yoga and breathing (they made excellent substitutes for toilet paper) but what was missing was the advice on day-to-day survival of the crap that comes with the diagnosis of a life-limiting condition. It was then that I realised that it doesn’t matter what label you are given, whether you see an endocrinologist, a rheumatologist or an oncologist. The struggles are the same. Sure, if you have Intercranial Hypertension you are going to need more Lumbar Punctures than someone with Lupus. If you have Fibromyalgia your pain management strategies might be different to someone that has Addison’s Disease. But, irrespective of what kind of condition you are diagnosed with, you will share the same difficulties and struggles with everyday life: how to deal with the lack of understanding from others, the troubles in explaining your limitations to your boss/spouse/mother/son/nosey carparking attendant, the adjustment from society’s ‘normal’ to YOUR ‘normal’. And thus, this blog was born.
I won’t tell you how to survive, at no point will I attempt to tell you how to cope or what you should or shouldn’t do (I’ve read books like that and they are only good for hitting the authors with or to use as an attractive doorstop.) I will attempt to help you navigate such mazes as coping with friends (or the lack of them), coping with work (or the lack of it) and finding your own sense of normal (as difficult as that might be) I learnt through trial and (extreme) error. But my hope is that, through this blog, you won’t have to. What I will do is offer the hints and tips that were given to me by friends, the internet and counsellors that I picked up along the way. Use this blog as you choose to: skip in and out of chapters, take the bits that are useful and discard the bits that aren’t. I’m not an expert on every chronic illness, but I’m starting to be an expert on my own. And that is the most powerful feeling that anyone can ever have. My last hope for you is that this blog IS useful to you, and doesn’t end up as a doorstop or, even worse, something to hit this author over the head with.