Monday has been my “mental health day” for a few weeks now. Unofficially so since November, when I began attending a support group local to me for people who were feeling down and struggling with life, but more so ‘officially’ this year (alright, this month) when my therapy sessions started.
Every Monday late morning/early afternoon I have a CBT session so I thought, I’ll dedicate my Mondays to looking after my mental health. Obviously I do a lot of self care throughout the week and take time out for my mind daily, but I wanted a day to really delve into how my brain is feeling, how it’s working at the moment, what is playing on my mind and what I’ve not noticed so much in the last week.
I don’t do a formal assessment – other than the questionnaires associated with my CBT – and I don’t journal (because hand writing stuff hurts so much physically – long-standing wrist issue). I would like to make writing part of the Monday schedule, but since I failed at that two weeks running I’m not going to put any more pressure on myself. I still have to remind myself that if I only do my therapy, then that’s OK. Because showing up for that therapy – even though it’s only by video call – is Hard AF.
(For the record, it does not help your pre-appointment nerves when your laptop decides to start in safe mode (for no clear reason), then spends forever fighting over what activity takes precedence (preferably whatever I indicate I’d like you to do, if you don’t mind), and makes you ten minutes late because the Teams app keeps wanting you to sign in even though you are already signed in and you just wanted to follow the bloody link to the meeting that took an age to find (because the laptop was running s-o-s-l-o-w).)
So yes, not exactly my finest Mental Health Monday on that front I’ll admit.
Therapy itself was ok, not as bad as I feared, although coming out the other side I’d say my “Cautiously Optimistic” assessment of it was far more “Cautious” with a sprinkling of “Optimistic”. I didn’t know what we’d be doing other than focusing in on one of my many behaviours that reinforces my belief that at random times I will throw up and never stop. Anyway, long story short (I’m not going to put all the contents of my therapy sessions here, by the way, that’s not my intention for my blog this time around) we’ve agreed that I’m going to contact my doctor and see if/how I can begin reducing my anti-anxiety meds, because I need to be able to feel as much physical anxiety as I can handle in order to try to retrain my brain that anxiety is manageable.
So I came away from the session feeling cautiously optimistic, but also a bit flat. I just felt like I was raking over old ground – even though I know I’m not because I’ve never broken it down and tried to address little bits of it at a time in this way. Talking about it is all good with me. Writing, no problem! Doing something about it – what we’re all about in therapy now – isn’t so fun. Especially when I have the double-edged fear of this therapy a) undoing all the good work I’ve done myself to get into a place I can cope with life pretty OK while b) not even managing to make any progress on either “curing”* or managing the phobia.
So I felt a little flat, and I went onto YouTube remembering I had a Tedx talk saved from a woman who has “overcome” emetophobia. I figured, Mental Health Monday, is there a better time to dedicate to listening and learning more and exploring ALL the angles? My CBT is a big part of my current recovery plan but it doesn’t have the be the only thing – that idea lifted my spirits no end. So, I watched this talk and I agreed with her, but it seemed to underline how I felt towards CBT. That I might just be putting myself through horrible feelings and coming out of it still with this crippling phobia. Because this is a bloody difficult phobia to handle; it starts at a very early age in most people and most sufferers learn to live with it over time, as the traditional and apparently most effective phobia cure isn’t ethically possible with this one.
*Plus I have never truly believed that all mental illness is curable, because nothing can erase either your past or your memories, but that’s a topic for next time.
Although I totally understood every word this young woman discussed in her short Tedx talk and agreed with her, I needed something more uplifting, something to drive towards. I wanted a story of women who are thriving while living with emetophobia and not letting the phobia stop them living the life they want to build for themselves. I went on to watch a few more videos other emetophobic women have made. Now, these were mostly women talking about emetophobia in relation to pregnancy and motherhood – but it hit the right note for me.
One reason I’m doing this therapy now is to be able to handle my fear well enough that I don’t pass it on to my children. I’m doing this therapy now so that I feel confident that no matter what happens during pregnancy, labour and birth, and my kids’ lives, I will not be the mum who is never there.
I’m doing this therapy now for a lot of reasons – but those two, I will admit, are the major ones.
Watching these videos made me think…maybe it’s time I added my voice – my actual voice – and face to raising the tricky and largely unknown world of emetophobia? In a spur of the moment decision, I set my camera up and talked for half an hour. I didn’t even say anything particularly useful, instead I used it more as a starting point for me to further develop into a vlog if I feel it’s a good path to take. It felt like the right thing to do in the moment, it felt like it would help me, and it did. Whether I’ll post it is for another day. Maybe I’ll never do another one, maybe I’ll do them weekly – a bit like my writing, it’s going to depend on how well I can teach myself to thrive with brain fog/writers block/stage fright.
The thing is, only emetophobia sufferers themselves can ever have any idea what life with emetophobia is like. We can try and create analogies to make non-emetophobes get an idea but truthfully, it is impossible to understand it unless you are living it because you’re afraid of something that can happen wherever you are, whatever you’re doing. It is with you everywhere you go because it is a fear of something your body is designed to do to protect you. True of many fears, but emetophobia makes a supreme example of it. Which means we need to talk more about it. A lot more.
Hearing another person talk about emetophobia, or watching them speak about it, is a bit different to reading something by someone else with emetophobia. Whether sufferers feel able to read or listen to people using words like ‘sick’ or ‘vomit’ will depend on where each individual is in their day and in their overall journey – another thing that makes it so hard to even mention emetophobia let alone get a conversation going about it – but it makes sense to have multiple options. You also reach different audiences with each method.
But the critical difference I personally discovered today, is that you can read something and think to yourself, “Wow! That’s so me! I can’t believe this person experiences this exact same thing!”… yet hearing or watching someone speak about their emetophobia provokes discussion. It stirs something inside you, it makes you want to use your voice as well, to comment or to speak to someone and say “Hey, does this make sense to you too?”, or maybe even “I’m so, so glad I’m not the only one living with these horrible fears/habits/anxieties/behaviours/avoidances”.
Whatever you are going through, you’re not the only one to experience it. Trust me.
There are hundreds of thousands of emetophobic individuals in the world.
Once upon a time, I used to write. Not fiction, no – mind you,
I am still determined to try my hand at a novel – but a blog. I wasn’t just a “blogger”
though. I wrote about mental health. I wasn’t just another mental health blogger
either. I was lucky enough to be able to turn my vast back-catalogue of
articles (each ranging from around 1500 to 4000 words) into a book, which I
self-published in 2016, and to reach a massive audience with one piece in
particular “A Letter To Those I Love”.
I stopped writing after that though. I stopped writing
because I didn’t know how to write any more. I didn’t feel I had anything more
to say. And I didn’t want to just be talking about mental health any more, either.
I felt like I’d put myself in a box: I was the girl who liked guinea pigs and
who had almost a lifetime of mental illness and trauma that had made me who I
But who was I? I wasn’t sure. Since 2016 I’ve been through
episodes of depression, suicidal ideation, anxiety, pain (physical), low (no)
self-esteem, weight gain, weight loss, new meds, old meds, loving yoga, hating
yoga, hating lifting weights to loving lifting weights.
I think a combination of two things have finally helped me settle back into myself, comfortable with who I am, understanding of most of my quirks and habits, feeling a spark in me again and feeling ambitious for the future. All of which are very conducive to writing. Depression was not so conducive. Even the idea of writing while staying under the duvet all day in bed didn’t appeal, so for a time I slept 18+ hours a day just to avoid the world.
I digress. Turning 30 last year was an important milestone.
Those who know me from days of old or who have known me through all my ups and
downs will understand what I mean when I say I really didn’t believe I’d see
30. To have made it through my 20s feels…euphoric. It feels like I’ve achieved
something by surviving. By hanging on in there through all the pain. I don’t
count the years in terms of suffering or pain any more, and to be honest, I don’t
consider “time” as a concept at all in day to day living. I don’t think “this
is the THIRD WEEK of awful knee pain, I’m sick of it”. I don’t go around
counting off the years I’ve been agoraphobic for. I’ve freed myself from time.
Somehow it feels like surviving my 20s was pivotal in setting me up for my
The second factor in my change in outlook has been work. I
left what I thought was my dream job in 2016. I not only helped to shape Guinea
Pig Magazine, but I WAS Guinea Pig Magazine in those early days and I was a
proud part of it for the first 6 years of its life. It took a long time to let
go of my relationship to my former boss, having actual nightmares which on one
occasion actually left me mute; physically unable to snap out of the psychological
turmoil induced by the pain caused by the whole situation. Today I have no
regrets, I bear no grudges and wish no ill-will toward the publication and
their team. I’m grateful for what I learned, on the good days and the bad.
I took some time “out” after I quit the magazine. It was
also around this time that I stopped my counselling sessions that by then I had
been having on and off for 7 years. I stopped writing. In essence, I “disappeared”.
In the year or so that followed, I was diagnosed with fibromyalgia, osteopenia,
my eyesight deteriorated quite considerably, and I spent most of my time in
bed. When the warmer months rolled around I eased myself back into yoga, and I
went really big on Instagram yoga challenges and trying to get picked up as a
brand ambassador. I wanted to train as a yoga teacher and set up an online yoga
class. I wanted to find validation and to find my purpose through yoga…but also
through Instagram. The numbers mattered to me. Breaking 1k followers seemed
like such a success! In truth, it changed nothing. I was practicing a lot but was
it real practice or was it showing off? Winter came around and I went back to
my struggle with daily pain and fear.
But then in early 2018, I decided – on a whim – to start
offering to help local guinea pig owners out with grooming their pets. One
person got in touch asking if I would groom her piggies for her…and that was the
catalyst I needed to consider actually turning that nugget of an idea into a
business. I carried on with the yoga but the numbers no longer mattered and I
didn’t run or participate in another challenge, or chase any brands hoping to
seek acceptance from them. I started practicing yoga for me and had an amazing
summer that year of free-flowing self-practice.
My business is what really helped change things though. It
is now 2 years old with more than 80 individual clients just in the last year
alone. It’s niche. It gets raised eyebrows; yes, when people ask I tell people
I am a guinea pig groomer. I also offer holiday boarding and through that came
to welcome my third guinea pig into the family. I’ve opened up memberships and
free information sheets and there are a million ideas I have, a few major ones
I am actively planning to put into action in 2020.
In the time I spent away from the guinea pig world, I was
able to get the break I needed from over a decade of constant advising and
answering the same questions over and over again…but more importantly, I was
able to find my own way. In all my years of advising I have attached myself to
someone else and adopted, to a degree, their style and some of their core beliefs.
I stopped using certain products, started doing more of this, less of that, no
longer recommending or talking to such and such a person… It was easy to be a
follower. I needed to step out of the flow completely, stop, and start again
from the bottom up. I established how I want to keep my own guineas and what
works for us, and kept my mind open to those I had shut out in the past.
Life isn’t perfect, it isn’t pain-free and every day isn’t
sunny or full of ideas and motivation. Every day without fail I end up sucked
into my phone, opening Facebook, Instagram, BBC News, MailOnline repeatedly over
and over, even though I just checked those sites 10 minutes ago. I am a master at
procrastination and time-wasting and I am lazy as it comes when it comes to
getting out of bed. Morning person I am not. And though these two are improving
I confess I do take things for granted and I am still absolutely terrible at maintaining
contact with friends and family.
I’m going to reveal a few things that I’ve not revealed
before, in the spirit of honesty and openness. I still live with my usual list
of ailments that many of you are very well aware of:
There are additional medical things I am dealing with as
well. Adenomyosis might also be endometriosis – I’m waiting on exploratory
surgery to find that out. An episode of acute prepatellar bursitis (“housemaids
knee”) has turned chronic, meaning a lot of knee pain. That self-injury scar on
my left forearm from 3.5 years ago? It’s 95% healed, but I still pick at the
surface of it and at any other skin imperfections: since childhood I have lived
with the need to “smooth” out my skin or to sate a psychological need to pick
at something. Dermatillomania, I think its name is. It’s a recognised thing but
it’s not an attractive thing to confess to – that you are a compulsive skin
picker. It’s impossible to explain it to someone who has never felt absolutely
compelled to do something you know you shouldn’t but it is exactly that, a
compulsion. Like an itch that drives you crazy until you scratch it. I used to
think it was just a bad habit from childhood. Maybe it is? It is certainly
something I learned as a child and acquired as a habit before I could begin to
It sounds ridiculous now to say that I’m in constant
physical pain and on more pain meds than I’d like, but the human brain doesn’t
always play logically. In terms of managing the chronic pain associated with
the arthritis and fibromyalgia, keeping my body moving helps, as do hot baths,
but I still need the medication as well: even though it’s “only” paracetamol
and codeine, it is every day, and my goal is to be rid of them altogether. My
logical brain forces me to acknowledge and be thankful, however, that I no
longer rely on buprenorphine or morphine for my pain; such was the stage I got
to a few years ago I basically accepted every drug option offered to me, no matter
how potent. Luckily I never became addicted and I didn’t have withdrawal issues
with either pain med.
I’m still on quite a few routine medications, around 5
prescription ones daily, along with 5 supplements I believe are helping. And
yes, I am still on Diazepam as well. I will be entirely truthful here and admit
I am reliant on Diazepam. This is not news as such, but it is an admission. Reliance
is different to addiction, but is rooted in fundamentally the same way.
Something works to ease the difficulties and make life easier in some way, and
you come to rely on it physically, psychologically, or both. I consider addiction
to be a much more physiological dependency, a very physical urge and need that
takes over mind and body, whereas reliance is more of a psychological dependency
– believing (or, as is often the case, knowing) that something can make this
easier so why not just take it and make life easier? Diazepam is not something I
need physically; I don’t crave it, I don’t need or want to take it every day,
nor routinely. But I do collect a script for 14x 5mg Diazepam tablets and 28x 2mg
Diazepam tablets every single month. And have done for some years. I don’t usually
have any tablets left at the end of the month’s script. Am I addicted? No. But
I am reliant on it when I need to go out and about. Not all the time, but I
definitely go through spells where I cannot get out the front door unless I’ve
taken anywhere between 2mg and 10mg Diazepam. My throat closes up tighter than
you can believe possible and until it’s relaxed – with the help of the Diazepam
– I can’t leave the house as I begin to panic.
This is something I feel compelled to address. The first
step in addressing it is admitting I have a reliance on it, and I’ve spent many
months thinking through every aspect of this to the point where I am OK with
being reliant on it. In the past I have tried other methods to stop my anxiety,
to send my brain down a different path before panic sets in – I’ve tried Rescue
Remedy, meditation, earplugs, chewing gum, eating, drinking (sipping at water,
not alcohol), Kalms tablets, and I’m on Propranolol which blessedly does
relieve the severe symptoms elsewhere in my body. But for my throat and my mind,
a few of those things help depending on the day and the situation…but deep down
I still think that only one thing can pretty much guarantee an end to the grip anxiety
has on my throat and allow me to lose the fear of leaving the house. And that
Over the last week I’ve had no Diazepam. I’ve been forced to
get used to going out without it. Normally I don’t leave the house without it, “just
in case” – in those situations I don’t always need them but it is a
psychological relief to know they are there if my anxiety spikes to a level I feel
is too much to handle out in public. But between the demands of Christmas, a
poorly husband (which meant me having to go out shopping on my own etc. for a
few days) and a house full of boarding piggies, plus taking on extra work at
weekends as well as during the week, I was exhausted – and physical exhaustion
combined with mental exhaustion meant anxiety took my throat hostage, locking
it into a vice-like tension the second I considered going out anywhere, and it
took some larger doses (which my GP knows about) on a few occasions to manage
to see through what was necessary. That knocked my confidence and I reverted to
taking small precautionary doses before leaving the house – 2mg up to 6mg –
just to make sure I was able to do everything that had to be done. Needless to
say, I ran out of tablets before my next script was due.
It’s been an interesting week of going without. I’m proud of
myself for how much I have been able to do, how much progress I have made in
letting go of this need to have this tablet to hand at all times. I’ve not been
able to go far – I stay within Huntingdon. Eating out is absolutely not an
option. In many ways I’ve gone a long way backwards. Except I haven’t: I’ve
taken some big steps forward. I’ve had some “bad” times, but somehow my
confidence although swayed has not been completely knocked. Even though it felt
terrible, my high-level anxiety didn’t tip over into panic. I just about held
on all on my own. It was hard, very hard indeed, to keep myself under control,
and I turned to my quirks to try and alleviate and distract: pushing my fingers
in my ears (a childhood comfort), looking down at the ground, moving slower and
more carefully, delaying or hesitating in getting out of the car/walking down a
supermarket aisle/driving past our home street to give myself the option of
going home instead of going on to my next chore. It has forced me to turn back
to meditation, to practice the gift of mindfulness and practicing actively
focusing my brain onto something of my choosing, rather than letting it run on
auto (my default setting for years and years has been fear).
I didn’t feel relieved when I picked up my scripts today.
I felt empowered.
I managed to get there and collect them, and even wait for
them to be dispensed, without needing medicinal help. My goal now is to
maintain this. To use this feeling to maintain this progress. As it stands, since
I’ve been going to the local gym to lift weights (~2-3 months) I have not taken
Diazepam to be able to get there. I know I can handle it and work through any anxiety
spikes. So I know I can do it. I know I can manage at least local trips out,
without taking medication to make it easier. Shopping is tough, but I can just
about work my way through it. Driving is even more of a joy to me than usual as
it forces my focus, and I love the feeling of directing my own brain to do
something I say it needs to do, rather than it doing its own thing.
2020 holds challenges, but they are challenges I have invited
myself. Some deliberately, others not, but however that challenge came to
fruition I am grateful to be shown that I have the opportunity to change. So,
between being a housewife and mum of piggies, getting my health back on track,
continuing to yoga just for me, to lift weights, managing and expanding my
business, working on my relationships with family and friends, getting in extra
training and qualifications, letting go of bad habits, and chasing a few goals
and dreams (F1 Silverstone Friday Practice we are coming for you!) it’s a
positive, if a little exhausting, start to the new decade.
I’m going to treat myself now to a red wine spritzer as a
reward for sitting down and writing properly for the first time in years, for
opening up as much as I have (oh the freedom I feel!) and for having been out
to collect my meds and been to the Post Office on my own after putting it off
for the best part of 3 hours! I’ll never have a six-pack or a perfect mind no
matter how hard I work, because the work-reward system is too good to give up, and
my reward is almost always a glass of wine, or chocolate.
Nothing in the world that can’t be solved with chocolate…
May 2016. A month I have a permanent reminder of as I live with the significant events of it day in day out. Marriage was of course the main event. I wear a ring and try not to throttle my husband day to day and do his laundry and all the nice housewifey stuff.
I do it all sometimes with a smile and a singsong, and always with an enormous scar/recurring wound on my arm. Usually bandaged, but occasionally not.
Self-harm. My one and only self-inflicted injury that has warranted an A&E visit. I won’t divulge how I caused the damage, as I am not writing this to encourage anyone to get to the same position I’m now in, 2 years down the bloody line. God, no. All anyone needs to know is that it was not worth it – and THAT is why I am writing this. It’s something I have largely kept to myself because it causes me deep humiliation. I know I was dumb. I know I was stupid. I know I could have caused so much more damage or even risked my life.
I know, I know, I KNOW!
I don’t need to be told it, or for people to glance at my arm then look at me reproachfully. I have to live with it and look at it 24/7 and the humiliation is quite enough for me without adding the shame others feel over it to the mix. I know you are ashamed, because I am overflowing with it myself.
In the moment I caused the injury, I loathed myself. I was not trying to kill myself: I will be very clear on that. I was dealing with a complex, difficult array of emotions over a situation I was not in that point equipped to handle, and that in that moment I could only see release in hurting myself. I wanted to keep it hidden. Unfortunately the damage was unprecedented, and as I said it ended in A&E. But coming back to “the moment”, and the emotions I was dealing with. I was mortified and humiliated to be me – this was even before I did the deed! – and I was frustrated with my useless fucking body not being able to do the things I could do a few weeks prior. Lupus (and, as I now know, fibromyalgia) is a shitty hand to be dealt. One day you can do it all. Another day you can do fuck all. That alone is a beastly thing to get your noggin around. I was only just learning how to try to walk that path.
Not only that, I was angry. I was angry with my husband. Irrationally so. Christ, he’s lucky not to have to worry about his body failing him, I should be thrilled! But in that moment I was angry that I had been dealt this hand and that he had no idea what it was like to live with a body you cannot fully control or predict. And it was around that time that the tables turned. He came into his own and I totally lost my own. In fact, as I sat in the car hurting myself, he stormed into the final of his first official Ninja Warrior competition. He did his final run and won it after having bandaged me up temporarily, and I had dragged my humiliated face back in to the venue to support him and film his final winning run. Well, it was the least I could do given we would then be heading straight for Leicester A&E. The shame. The selfish, lame, piteousness of it.
The thing is, and it is very complicated for me to comprehend let alone to explain…I wasn’t angry with him or at him. I was angry at myself because I didn’t know how to let go of my own utter failure and embarrassment and hurt in order to support him fully. To this day I struggle because I have the same battles against failure, except they’re even bigger…and his successes are so much bigger too.
How does that cut at the end of May 2016 relate to May 2018? I still have the cut. In A&E they glued and butterfly (sticky) stitched it up and put a plaster on it. We felt back then it needed stitches but the nurse in A&E disagreed…it was late, we weren’t going to argue against him, it was dealt with as it was. Soon became evident I was highly allergic to all kinds of plasters, dressings and tape on my skin. Once the dressing came off it was a fairly neat(ish) line, but it itched – mostly from the allergic reactions from the dressing but also the healing process – and as we have established I have little self-control, and I still hated myself and figured if I opened it up and made the scar worse I truly deserved nothing less. I think with the addition of the 2-3x day baths I was taking the skin softened and dried out in equal measure, increasing the thinness and itchiness, and I essentially kept reopening the wound. It would heal over in time, but I noticed that the scar was changing. It wasn’t a flat line any more. It was a big, lumpy, swollen mess of pinky-purpleness.
In September 2017 I had had enough, I knew it was a health issue that was more important than a continual I-hate-myself-and-I-deserve-this battle, I called up the doctors surgery, booked in with a nurse, and henceforth began twice weekly appointments until the end of December. A tissue viability specialist prescribed a steroid cream in December which, along with the dressings the nurses used (special combinations to minimise the allergy problem), finally closed the wound up. They also confirmed in September and December that unfortunately I had developed keloid scarring; rather than having a nice flat line of a scar around 5 inches long down my arm, I had a miniature mountain range 5 inches along the length of my arm. It happens when the skin basically overgenerates the materials needed for healing. Instead of sending in minimal tools to tie the skin together, it literally piled them on, over and over and over again.
The thing is, the skin on top of keloid scarring is wafer thin. So thin you can see through it. So thin a simple scratch can peel off the entire top layer of skin on my entire scar with no effort. I also have nerve pain in the scar – no doubt a combination of the damage from the initial injury and then the healing complications.
Without protection of a bandage, the scar itched and hurt…and so re-opened…it’s been open again for about a month or so, so I went back to the surgery this afternoon to start again, but this time with a date already booked at the Plastics department in the hospital to hopefully have the keloid scarring removed, and the skin stitched up. And then we hope for no further keloid development.
Was the self-harm worth it? That moment of irrational anger worth a lifetime of a reminder, of humiliation? No, it wasn’t. But, it was all I had in the moment. Self-injury is sometimes a cry for attention. Not the – “hey, look at me!” kind of attention, but the loving kindness, non-judgemental, I’m-really-struggling-here kind of attention. So yes – it was that too for me back then. Self-injury is also a common coping technique when faced with complex or unwanted situations or emotions: sometimes the physical pain is needed to distract the brain, or to release pent up emotion that you don’t otherwise know how to release. It doesn’t “work” per se, of course I would never recommend it…but at the same time, there is a reason self-harmers find that the habit is ingrained deep in their brain and that it often crops up, even decades later, as an urge when the going gets tough.
Case in point: having returned home from my appointment to dress my arm, which in itself was delayed by far too long, I am doubly humiliated, ashamed, and devastated by my self-injurious behaviour. It not only impacts on me but on my loved ones and once again, I treated my beloved husband to a self-destructive wife. Not only did he have to share in the shame of me having to expose my arm and have me explain its history (in as few words as possible – I was almost beyond the ability to speak at this point) but in the half-hour wait in the waiting room, he had to put up with a wife who was pacing, shaking, taking very audible slow and deep sighing breaths, swigging Rescue Remedy more or less from the bottle, crunching an extra Diazepam tablet without water, biting and hitting at myself, and making my ears bleed. Not to mention lurking in the doorway of the surgery looking down at my feet, finger shoved in one ear to dull the sounds of the surgery which were overwhelming me, brain and body, as I couldn’t sit down any longer because I felt so strongly that I needed to leave, NOW.
For me self-harm has always been a culmination and a combination of difficulties.
That injury on my arm right now is a culmination and combination of those and more. The injury told the story of my shame, my embarrassment, my feelings of failure and humiliation and anger. The scar does not remind me of that. It forces me to acutely relive it every day. To hide it even from my husband, because to me, it is an abhorrent sign of my messed up psyche and it is, quite frankly, ugly to look at.
As a general rule, I don’t talk about my self-injury, let alone pick out one incident in particular. But, in order for people to understand something as searingly obvious as what I live with on my arm, sometimes it’s worth speaking up.
Every day there’s a new story showing up on our news feeds about how someone with chronic bowel disease was refused access to toilets while in town or how someone was left a note telling them off for parking in a disabled parking bay when they don’t have a wheelchair.
There is a huge amount of ignorance in society about what illnesses actually “disable” people enough to warrant them disabled access or emergency bathroom.
First of all, there are more illnesses that disable individuals that are hidden, or invisible, than there are visible disabilities. For everyone in a wheelchair, the odds are you could find 5 more people in the same car park who have an illness that disables them physically or mentally on a long-term basis.
Secondly, there is a poor understanding of the ways in which many illnesses affect the individual afflicted by them and how they are classified as a disability. Not only that, but illnesses fluctuate. What might be possible one day might be impossible the next. It is entirely possible that someone may be walking around town unaided on Monday yet needing to be pushed in a wheelchair on Wednesday.
Thirdly, it seems that society doesn’t fully see that what a disabled person shares online might be things they can do maybe only sixty, fifty or even as low as five or ten percent of the time. A day out at the zoo. Training and exercising. Life is as up-and-down for disabled persons as it is for healthy, able-bodied people.
Finally, there is a lack of awareness of the wide variety of reasons disability access is allowed and needed by some people and the situations in which such concessions need to be made.
I can’t address every problem, every illness, every possible situation. What I can do is try to explain life with an invisible illness and why society as a whole should never judge based on what they witness at any single point in time.
I will use myself as an example. I am on the lupus spectrum, meaning I have many of the symptoms of lupus but not all. Put simply, based on history, tests, scans and symptoms it’s more likely to be lupus than other rheumatic diseases. Inflammatory arthritis is involved. I also have fibromyalgia. My symptoms include extreme sensitivity to heat and cold, a sensitive digestive system, irritable bowels, chronic fatigue, exhaustion and lethargy, a fluctuating appetite, swollen joints, joint pain, muscle pain, nerve pain, constant headaches, fevers, brain fog (includes problems with focus, memory loss, concentration difficulties, forgetfulness, frustration, irritability) and severe physical pain – I’ve needed an ambulance on two occasions in the past year, needed to be lifted out of bed and dressed by my husband, and I’ve tried a dozen different medications which all come with a long list of potential additional problems in the form of side-effects.
On a really bad day, I can be seen visually as being disabled. I might need crutches or a wheelchair. I might need to stay with my husband or mother at all times. But for the most part my disease is under much better control now, so I’m able to drive myself, to walk around town, to do two hours of yoga, take days out…I can physically do much of what I want to do. But here’s the thing: if I don’t pace myself i.e. limit and take great care over the way I expend my energy, I’ll be so fatigued I’ll just sleep for the next 3 days, and I could be in enough pain to need morphine.
A huge number of illnesses act in very much the same way. They fluctuate. Sometimes the invisibly-ill will be on a really great run, doing very well, but what you on the street don’t see is that it’s as a result of many appointments with NHS specialists, a dozen medications, a therapist, weekly check-ins with our GP. All of this comes at a huge cost to the NHS. The more we aggravate our condition the more we need those services, the more time we will have to take up from our overworked and in-demand NHS staff and the more drugs we will need, using up time, resources and NHS funds.
Sometimes what aggravates an invisible illness is walking longer distances. Having to stand at crossings to get where we need to. Having to carry heavy shopping bags further back to our car. Sometimes even if we look and act okay it’s already been at a huge expense and the use of a disabled parking bay prevents us needing to use up still more of the NHS’ valuable time and money. Perhaps if we don’t use it, we will gradually or maybe suddenly get a lot worse and be completely unable to work, or to be the mother/father, wife/husband, friend and member of society we want to be.
Not all disabilities are physical, either. Mental illness is a disability. This is a difficult concept for anyone who hasn’t struggled with a runaway mind or a chemical-imbalance of the brain to understand. My experience has proven mental illness can not only be debilitating and life-limiting, but life-threatening. An illness of the mind isn’t something that can be shaken off; it can’t be taken away by popping a pill or saying to yourself “get a grip!”; there are no fast or instant fixes, and many symptoms manifest within the body in addition to the psychological aspect. I’m now 28 but have suffered severe anxiety, agoraphobia and emetophobia since the age of 7. In the twenty-one years I’ve suffered I’ve had three nervous breakdowns (now known as being “in crisis”), and I’ve also developed panic disorder, depression, mood disorder, suicidal ideation and turned to self-injury as a coping mechanism. I’ve had more private therapy than I have had therapy on the NHS, but I take medication, again prescribed by the NHS.
Mental illness fluctuates just like a physical disease. Mental illness can cause a vast array of physical symptoms: overwhelming fatigue, lethargy, apathy, brain fog, nausea, diarrhoea, trembling, weakness, sweating, hot flushes to name but a few. It might mean that we need to park our car closer to the shops to limit the amount of time we spend in town. It might mean we need to carry a disabled-access card so that we can use more toilets than the rest of the public because our anxiety has turned our bowels to liquid. It might mean we avoid certain things for certain reasons.
Most people think the only purpose of disabled parking and disabled toilets is to allow room for a wheelchair.
The reality is that there is a great deal more to disability than physical body impairment and missing limbs.
It is possible to be in too much pain to walk, but the next day be on the yoga mat in Downward-Facing Dog.
It is possible to be carrying a toilet-access card but to go on a walking holiday.
It is possible to take a flight, a train and a coach, but to not be able to drive yourself.
It is possible to walk up and down a mountain one day, but be unable to step outside our very own front door twenty-four hours later.
It’s possible to be able to eat a three course meal at home, but to be unable to eat anything out, even if it means going the entire day without food, making us very weak.
We might look fine. Some days we might feel pretty good. But our “pretty good” is your “pretty rough” day. We don’t have the “feeling perfect” days many of you do. The best we can hope for is to manage our conditions. Sometimes all we want is to be free from pain, to have some energy, or to just act normal for one damn day. If that means that using a disabled bay, having access to disabled toilets, or if other concessions need to be made – then so be it. We shouldn’t have to feel guilty about that. We shouldn’t be made to feel guilty for a disease we didn’t ask for. We shouldn’t be made to feel that we can’t share our achievements just because we need to make some things in life a little easier on us. We have every bit as much right to shop without being in pain, to walk around town without being afraid we can’t reach a toilet, to hit the zoo with our family without being too petrified to go because the only parking space might be a five minute walk away!
I have multiple disabilities. But I do yoga. I do advanced yoga as I’ve practiced it for 5 years now and it helps my mind and body. I do whatever my body is capable of doing in the moment without causing it any extra pain. It usually relieves pain, if anything. And yet the sad thing is that my old employer, who I thought understood my different conditions, blamed my yoga for my lupus and my wheelchair for my arthritis. She suggested that doing the splits is what causes my joints to seize and why I’m in so much pain and she got fed up of the reasons I would come back to her with for why I didn’t work at a certain time (even though I always more than made up for anything, and we never – not once – missed a deadline). Needless to say, I no longer work for her, and it is this kind of ignorance that makes it so difficult for so many others with hidden illnesses to cope with day to day life. My old employer had intimate accounts about all my illnesses yet I was still treated with deep ignorance and disrespect.
Put yourself in someone else’s shoes:
Imagine how hard it is for you, as someone suffering in silence, dealing with chronic pain or mental illness or any other invisible disease, to go out in public, to go to work, to run a family and a home.
Imagine if you could do all of that but you are given a few tiny miracles; things were made just a little easier for you as you are granted special access to toilets or able to park in a disabled bay so you don’t have to walk as far to your doctor or to the shops.
Then imagine being handed a note when you come out of the toilet saying you’re a disgusting human being for blocking a disabled toilet when you should just wait in line like everyone else, or you arrive back at your car to a note on your windscreen saying you’re a piece of scum, that you are blocking a space that is needed by someone who actually has a disability. Or you’re approached in the park while you’re doing yoga to be told, “Oh I saw you! You’re not disabled, look at you! Get your car out of the disabled bay because you clearly don’t need it.”
Life is hard enough with invisible illness. It actually helps us to still feel needed, to still feel that we have a place in our community and a job to do and a family who needs us. Sometimes we need help to do those things though. Whether it’s easier access between our car and our destination, ready access to toilets, special requests on where to be sat in a meeting…whatever makes us able to function and serve just like everyone else. We don’t like to bring our illnesses to attention. We’d rather hide them away and pretend we don’t have them because we know we’ll be treated differently, usually in a negative way…but because of such attitudes, people like me (who have years of advocacy, media work and blogging about illness to raise awareness) have to lay ourselves out and sacrifice our own energy to try to get the world to understand. The thing is, the world so often doesn’t want to understand. It’s easier for people to judge and not question their judgement.
When society makes things harder for us by passing judgement on something or someone they know absolutely nothing about, they make it so much more likely that those people who secretly fight so hard to serve and work and simply survive, will just want to give up.
By accusing the invisibly ill of faking it and of being a waste of space or pathetic and lazy excuse of a human being, you might just lose one of the key members of your community. All over an assumption that because someone has all their limbs and can move them, they are in perfect health.
If you really have to say something and you can’t hold your tongue, my advice is this: offer to help. Don’t ask. Don’t judge. Don’t assume. A little compassion goes a long way. The odds are you’ll learn something about the true nature of disability that you wouldn’t have known before.