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“Happy is what happens when all your
dreams come true.”
Stephen Schwartz, Thank
Goodness, Wicked: The Musical
If you have a social media account, you’ll likely agree with me when I say that Wicked is everywhere right now! The release of the new movie, starring Ariana Grande and Cynthia Erivo, is based on the original musical and it seems to be really trending right now – especially their skit for Jimmy Fallon (which you can watch here). And so, I decided to jump on the bandwagon with this blog post where I’ll be picking out some lyrics (you can read all of them here) from the Wicked song; Defying Gravity and illustrating how I relate to each bit…
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Each
set of lyrics I’ve picked out to write about are actually relevant to different
parts or aspects of my life, and so this bit; is really relatable with my
mental health for over this past year or so. For a while now, I’ve been
experiencing strange – I call them ‘weird’ – thoughts and beliefs around so
many different things that could, admittedly, mostly be classed as being of a
paranoid and delusional nature.
In
February last year (2023), I had this absolutely incredibly ‘wild’ belief that
there was a rabbit in my head controlling my brain and my body. It led to me –
understandably – being detained under Section 2 of the 1983 Mental Health Act and
admitted to a psychiatric hospital for around ten days. As a result of that and
the fact that these strange thoughts and beliefs continued after the admission,
meant that I began questioning the relativity of my diagnosis of Borderline
Personality Disorder. This was actually something which had started to become a
serious consideration probably a year or so before these strange experiences
even began. I think I just became aware that I no longer struggle the way I
used to. My mood wasn’t all over the place, I wasn’t full of flashbacks and
memories of the rape and abuse I experienced when I was younger, and I wasn’t
as unsafe. Being more than aware and understanding of the diagnostic criteria
of Borderline Personality Disorder (BPD, but now named Emotionally Unstable
Personality Disorder – EUPD) when I was diagnosed in 2009, I felt I had a really
fair point in believing it wasn’t a valid assessment of my mental health any
more. However, my one hesitation was the knowledge that the process and
criteria had changed since changing the name of the Disorder to EUPD and I
wasn’t fully aware of the new way.
Despite
that small level of uncertainty, I was mostly convinced that I was right in BPD
no longer applying to the state of my mental health; to a point where I felt
confident enough in requesting that my Community Psychiatric Nurse (CPN)
arrange a diagnosis review with a Psychiatrist. Finally, in April this year, I
met with a lovely Psychiatrist from my local mental health NHS Trust (CNTW) and began the process of
reviewing the BPD diagnosis. By that point, numerous professionals –
particularly my local Crisis Team – had mentioned Psychosis when referring to
my current mental state and labelled the thoughts and beliefs I was
experiencing as ‘psychotic’ so I was even more reassured that I was right in
questioning things and asking for the review.
Since
that appointment (which I blogged about here), I’ve met with the
Psychiatrist on around three or four more occasions – with the most recent
actually just being December 10th! In this appointment the
Psychiatrist had me do something called the Browns Assessment of Beliefs Scale
(you can see one here) and at the end of the
appointment I asked him if he was having any thoughts on a new diagnosis of
whether he agreed with BPD still. He told me he had a working diagnosis, and I
was like “and…? Do you want to share that with the rest of the room?!” He said,
“I really think you might have Delusional Disorder.” I actually got really
emotional from that, and for a number of reasons:
1. It feels like I’ve been arguing
forever that I have a different diagnosis now.
2.
Despite
my blog’s title; I have come to see BPD as a bit of a defining feature of me as
a person.
3. I had obviously heard of
‘delusions,’ but not a full-on Disorder so I had no clue what it meant.
He
actually – surprisingly – encouraged me to Google and research the diagnosis to
gain a better understanding and in response to the notion of feeling BPD is a
defining feature; I knew that writing/blogging about it would help with that
because I feel it allows me the opportunity to really, properly process and
come to understand or accept things like that. So, basically; the purpose of
calling my blog ‘I’m NOT Disordered’ was to make the point that having a mental
health diagnosis, doesn’t define you. It doesn’t mean that’s all that you are. That
there’s nothing else about you that’s worth knowing.
Now,
in addition to having named my blog that for this reason, there’s also the fact
that I’m a very stubborn and determined person so to find that actually, I’m a
bit wrong – that I’ve come to contradict everything I had stood for… Well, it’s
kind of awkward and really something that I sort of don’t want to face and
confront because it feels like admitting I got things wrong and that I didn’t
really know what I was talking about when I voiced all those thoughts and
beliefs on being defined by a diagnosis. The tricky thing is, I’m actually a
really big believer and advocate for having a diagnosis. So many people voice
the distaste of having a ‘label’ and the thought that it can cause some really
horrific experiences of stigma and discrimination.
Having
had BPD for over a decade now, I’m likely one of the most experienced persons
in having others be discriminatory and stigmatising against me because of that
diagnosis, but I’ve come to learn something. The belief that the fault in these
instances of stigma, doesn’t lie with the diagnosis; it, instead, lays with the
person/people/organisation who is illustrating such a negative, hostile,
incorrect, awful, upsetting, frustrating, and detrimental attitude and response.
It is their lack of knowledge, understanding, education, and training that is
to blame here and the proof is really in the pudding – if it was the diagnosis
at fault, everyone would treat you that way. But, when you discover – as I did
– that mental health professionals or persons who are specifically trained and
knowledgeable on a specific diagnosis, can be a lot nicer, more polite, kind,
dignified, caring, thoughtful, and nonjudgmental; it illustrates that it’s more
about the person and their attitude than the ‘label.’
For
me, the bonus or benefit to having a diagnosis is that it can allow you to gain
access to specially trained services and professionals who are specifically available
to help and support someone with your diagnosis and so they might be better
placed at helping you to cope with your experiences and the symptoms you have. Having
that specialist person or service, can really genuinely make an actual,
lifesaving difference.
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So,
I feel there are two huge areas of my life where I have some really decent instincts
and spot-on gut thoughts and feelings…
The
first, is my own health – both physical and mental/emotional. The bit around
this theme where I think is really relevant and a recent change; is that a year
or so ago, I started experiencing seizures and after seeing a Neurologist, they
felt sort of dismissed and diagnosed as being Non-Epileptic Attack Disorder
(NEAD – which you can read more about here). Now, it’s not about me
thinking any bad or wrong things about that diagnosis in general, it’s that I
knew that it wasn’t right for me. I’m a huge believer that you know your own
body better than anyone else and since Day One of the seizures; I’ve known
there was more to it. And I’m massively convinced that the thought process
behind these not being Epileptic was my history of mental illness.
To
be clear though, I don’t believe that’s the Neurologist’s fault and it’s not
meant as a dig at him! I think it’s just a popular mindset and assumption to
make; that it isn’t personal because it’s something which I’ve actually heard
of many people experiencing. Not just regarding seizures though, because I’ve
heard of – and have personally experienced! – so many people with a mental
health diagnosis having any physical illness symptoms dismissed, ignored, or doubted
and met with scepticism as to the degree of how genuine they are. In all
honesty, I don’t understand this; I don’t understand how people can think that
just because someone has a mental illness it means they’ll fabricate physical
illnesses. Perhaps it’s just another case of ‘well, one person did it so
everyone else must do it too.’ Being boxed and defined by the behaviours and
attitudes of others, is something which – I think – is all too common in the
mental health world.
Another
semi-recent example of this happening was when I first broke my wrist in two
places two years ago and after around 8 weeks, I was still in so much pain and
my GP practice at the time accused me of becoming addicted to the painkillers I
had been taking since the emergency surgery on it to realign one break and
place a metal plate on it. I was filled with the distinct notion that I was
going to have to fight to be believed and heard. And again, I’m sure there are
people out there who become addicted to painkillers and profess to be in agony
when they actually just want the medication. But why should I be pigeon-holed
for the fact that others have done it?
In
the end, I was finally referred back to Orthopaedics and an x-ray showed that
the plate was placed too high and was rubbing on other bones and that the other
break to my Ulna Styloid (that bone-y lump on the outside of your wrist) hadn’t
healed at all. I’ve since had two further surgeries to attempt to fix the break
because it’s refusing to mend despite a lot of metalwork! I’m now scheduled for
another surgery in the new year where the Orthopaedic Surgeon will be doing a
bone graft from my Iliac Fossa (your hip bone) to my wrist! And I can’t help
but wonder; if they’d took me seriously immediately, would I have needed all
these surgeries and all this metalwork, or would it have worked straightway
because it was caught early on?
The
second area of my life where I feel I have really good instincts is with I’m
NOT Disordered and my blogging career in general. Many of you will likely know
the story of how and why I started blogging, but there’s been so many new
readers recently that there’s also likely a ton of people out there reading
this who have no idea of that beginning. And it’s a huge illustration of my
instincts with my blog so I’ll share it now…
I
was a sectioned psychiatric hospital inpatient on a ward that specialised in helping
and supporting people with a Personality Disorder diagnosis and had just had a
1:1 with my Key Nurse. I was the only person on the ward to have the same Key
Nurse for such a long period of my admission (which lasted two and a half
years) and so we’d grown quite close in terms of having a trusting relationship
and feeling like I could really confide in her and be open and honest about my
thoughts, feelings, and experiences. We had such a good bond, and she played
such a huge role in the creation of I’m NOT Disordered and the early days of
it, that we’re actually still friends on Facebook! Anyway, in the 1:1 we agreed
that every night, I would start writing little bits about the abuse I
experienced when I was younger because I had finally come to recognise and
appreciate that the only way the staff could really help me would be if they
knew why I needed help. If they knew why I felt the way I did, had the thoughts
that I had, and did the things I would do to cope with everything I was
experiencing.
In
agreeing to begin disclosing more details and information to the staff, my Key
Nurse told me that she would write up a support plan for all the staff to know
what I was doing to ensure that there was extra support in place for me during
the period of time when I was doing this writing. Coming out of the conference
room and walking to my bedroom, I had this thought that I wanted to begin
documenting everything that was happening for me because it felt like I had
taken a huge step forward and toward recovery. In my room, I found my laptop
lying on the bed. This was strange because we weren’t allowed our computers
until a particular time in the evening and even then, you had to go and request
that the staff give you yours from the security cupboard, and I’d gone into the
1:1 before that time so I hadn’t requested to have it. It obviously just meant that
the staff had known that I always ask for mine and they’d realised I couldn’t
because I was with the Nurse, but in that moment – with the beginning of the
idea to start documenting my journey – it actually felt like a huge, meaningful
sign.
Without
pausing at any point to think things through, I Googled ‘how to start a blog’
and came across WordPress and Blogger. I didn’t do a pros and cons on being a
blogger and having a blog to consider whether I was up for the challenge and
felt that the pros made the cons worthwhile. WordPress immediately looked too
technical and intimidating, so I created an account on Blogger. I didn’t research
more about WordPress and look into tips and instructions. Then I clicked
‘create a blog’ on Blogger and typed ‘I’m NOT Disordered’ into the ‘blog title’
box. I didn’t brainstorm titles and consider the benefits or the negative
connotations around each one. At no point did I consider my actions and
decisions. And, whilst, when I’ve facilitated Blogging Workshops at a local NHS
Recovery College, I always recommend people take all the steps and measures
that I didn’t, I don’t regret anything. I don’t regret not doing the things which
I advise others to do. But I do recognise that had I done those things, I might
not have had some of the hardships that I’ve experienced in my blogging career or
the challenges that have come up throughout the journey of I’m NOT Disordered.
However, without those things, would I be the blogger I am today? Would my blog
even be the blog that it is today?
I
think that the instinctual blogging thoughts, feelings, and ideas have
massively continued throughout the past eleven years of I’m NOT Disordered. One
of the largest benefits I’ve experienced as a result of my blog and blogging
career, has been the confidence and belief that I’ve found my purpose in life.
For so many years, I held the belief and the conviction that I was put on this
earth to commit suicide at a young age in order to highlight and bring to light
the failings of mental health services and psychiatric professionals.
Eventually, when I was admitted to the specialist psychiatric hospital after
being on life support, I began seeing a Therapist on the ward and we decided to
tackle this thought. I actually blogging about our work on it (which you can
read here), but basically we went through
anything and everything that I had that would contradict the belief and
everything that supported it to be true, as well as discussing the pros and
cons to the belief. Amazingly, that one session, ended up abolishing the entire
thing so that I finally had a clear head, and I think doing this, was what
really allowed my blog the opportunity and the chance to become my purpose.
From
that personal experience, I think that feeling that you have a purpose in life
can honestly be lifesaving and it can really stabilise a person, provide
strength, determination, motivation and hope. With my blog being the provider
of all of these attributes, I think this has played a huge part in my instincts
around creating content for it and making decisions around collaborations, the
blog’s aesthetic, and other behind-the-scenes matters. I’ve come to know what
my readers like to see on I’m NOT Disordered, as well as learning to balance
this with the content I enjoy producing. I’ve come to know the types and the
nature of collaborations which do well – or which will do well on my blog in so
far as popularity and the benefits it brings to the partnering organisation.
However, despite this knowledge and certainty, there have definitely been
moments when I’ve had to just ‘close my eyes and leap.’
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When
I think of teamwork and being united, I actually think of my pets! If you don’t
know, I have two mini-Lionhead, lop-eared bunnies; the eldest is three and is
called Luna, then Gracie is one. Then I also have a maine coon, rag doll mix
cat called Ruby who is also one.
A
huge lesson I learnt these past two years with my pets came from the loss of my
rescue calico cat; Emmy in October 2022 (you can read about her death here). She and Luna had been
together for a year or so and were really close – I actually have a video on my
YouTube of when they first met (which you can watch here)
and then that night, they were washing themselves at the same time right next
to each other (you can watch it here)!
It was so cute! And in all honesty, I don’t think I realised quite close and
bonded they were until Emmy died because the hardest bit of losing her, wasn’t
about me and the toll it took on my mental health. It was actually about having
to go home to Luna without her best-friend, knowing that I couldn’t explain to
her that Emmy was gone forever and that she still had me, and we would make it
through the loss together.
Now,
the bit that I absolutely hate the thought of and which I got really, really,
really wrong(!), was when Luna started pushing the cat crinkle tunnel around
the sitting room in circles. I would laugh and thought it was cute and funny.
To the point where I videoed her doing it all the time and would post it on
social media and send the videos to my Mum. Everyone online laughed and my Mum
agreed with me that it was really cute. However, in mentioning it by chance to
the Vets at a routine appointment, she said it was actually an act of grief,
and that Luna was getting frustrated because she was missing Emmy and the
tunnel still smelled like her, and she missed having someone to play with, so
she was desperately trying to entertain herself.
I
felt stupid and heartbroken. Before that, I had thought my instincts with my
pets were faultless and would have never thought that I’d get something this
serious so wrong, so it tore me to pieces to think that she’d been distressed
and upset, and I’d been laughing and videoing it. Others have reassured me;
‘how were you supposed to realise that? I didn’t!’ but it’s one of those things
where no matter how many times someone reassures you, no matter who it is
that’s reassuring you, no matter what they’re saying to reassure you, it makes
little to no difference. I always try to find positives in things though – no
matter how dire the situation appears to be! And so, in this instance or
situation, I came to concentrate on the fact that as soon as I knew better – as
soon as I was told her behaviour wasn’t funny – I did everything I could to
make her feel better. Even though the advice was literally “get her a friend;”
I didn’t doubt it or stop to consider how feasible and practical that would be.
I just listened when the Vet said that it would be a lot easier to introduce
her to another bunny than a new cat and so I began my search for another mini-Lionhead.
And so, in January 2023, I added Gracie to the family!
I
decided to introduce the bunnies to each other a few hours after settling
Gracie into the sitting room and they immediately sniffed each other and then Gracie
hopped off and Luna went racing after her and they started running around in
the cardboard house I had for Luna, and that was it – their very special bond
was born! I honestly think that getting Gracie is one of the greatest decisions
I’ve ever made in my entire life. And that might sound silly to a lot of people
– especially those who really don’t understand or appreciate just how special
rabbits can be – but, to see the change in Luna? How could I not have regarded
that decision highly?! It was like, once I knew Luna’s behaviour with that
tunnel had been grief, I spotted other little bits with her too – like how she
used to scratch at this cupboard in the kitchen. I realised it was the one I’d
kept the cat food in. And so, getting Gracie, a lot changed in Luna. I almost
immediately got this more upbeat sort of feeling and sense from her. Like, she
exuberated fun, light, happy, and cheerful thoughts and feelings. She was the
epitome of content because I got the distinct impression that she had found her
soulmate and that’s another positive I try to hold onto; if I’d recognised
Luna’s distress at an earlier point, it might not be Gracie who I’d gotten and
who could guarantee she would have gotten along with any other rabbit. I don’t
think it mattered how desperate she was for a new friend, she still had to be
given the right friend.
Another
good thing with getting Gracie was the impact it had on my mental health; that having
two rabbits in my home was like the ultimate illustration of recovery! When I
was little, I had two rabbits and after ‘interfering’ with the nest when they
had babies, they killed them, and I just remember the blood in the hutch. So, a
while after my mental health deteriorated, I began experiencing visual
hallucinations (as well as auditory) of rabbits. I had this belief too where,
if they were dirty and muddy, it meant something bad was going to happen and
this made me afraid of them and upset when I saw them. So, the fact that I now
actually own two bunnies and live with them 24/7? Well, I think that it shows
huge progress in my mental health recovery.
Finally,
a little bit about Ruby!
The
decision to get Ruby largely stemmed from the fact that Luna and Gracie were
always together in a different room in the house, and I was by myself. Now, I
think that me wanting company when I’m at home is mostly driven from being in
the psychiatric hospital for two and a half years where I was surrounded by other
inpatient and staff literally 24/7. It was one huge reason why, before moving
into my own home in the community, I went into a rehab unit where each inpatient
had their own bungalow and there were staff in one too. So, you had that
support there who were available all the time, but you also had the
independence in having your own home. It was a brilliant in-between step for me,
and I think it was perfect for me being able to adjust to being in the
community and only having professional support when I picked up the phone or
attended an appointment. And I think that despite being in a much better place
with my mental health in 2023, I still sort of… Well, noticed the times when I
was alone. Like, it’s (being alone) something I’m always very conscious of. I
mean, where a lot of people might just go about their day, make food, watch TV,
read a book… The whole time, while doing things like that, I would be thinking;
‘there’s no one else here.’ And feeling sad about that.
So,
whilst I love my bunnies and absolutely adored knowing they were there, it just
wasn’t the same as having a little cat follow me around and curl up in my lap, purring.
And so, Ruby came along, and I couldn’t have wished for a more bonded cat!
Honestly! She’s absolutely obsessed with me! It’s amazing because she/our
relationship has ended up being a huge reason for me to avoid hospitalisation
because when I have had to be admitted to hospital – or even going away overnight
for events and lovely opportunities(!) – I’ve missed her so much and a huge
part of that was knowing that she’d likely be sat missing me too. Another great
thing with having the bunnies is knowing that when I’m not home, Ruby still has
company in the form of Luna and Gracie! And I think that she probably finds
this fact really helpful because I’ve found that when I have been away, Ruby
seems to have become a lot closer to them in following them more and spending
more time lying by them just watching them. It’s lovely to see because even
when she does this, she still spends the majority of her time with me so it’s
completely ok!
Anyway,
not having children at the age of 33 – when almost all of my best-friends have children,
this seems like a big deal but actually, that’s not a huge age! – I honestly
feel like my pets are my babies! And I think that this probably helps
contribute to this whole teamwork feel that I have with them and the reason why
these lyrics reminded me of them.
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