Today is New Year’s Day, which also happens to be the day after my birthday. And this year, for the first time in my adult life, I’m not hungover. In fact, this is the first time in my life that I have not spent either Christmas Day or New Year’s Eve with family and friends. Whilst I could list various reasons as to why I chose not to be around other people, the simple truth is that I’ve not been feeling very cheery recently. Rather than put myself in a situation where I would, in all likelihood, end up badly sleep-deprived with a hideous hangover to contend with, I decided instead to opt out of the festivities and spend some time alone thinking about how I feel.
I’m aware that some people will be reading this and thinking, ‘That’s a bit miserable,’ and I totally understand where this comes from. In a culture which over-values sociability, the idea of spending time alone when we’re supposed to have fun with other people is almost unthinkable. However, what I will say in my defence, and in the defence of the thousands of people out there who also find the whole Christmas and New Year period a difficult rather than enjoyable time, is that sometimes allowing ourselves to feel miserable is exactly what is needed.
To those who have never struggled to manage their so called negative emotions, this may sound ridiculous. After all, the story we’re so often told is that smiling, thinking positively and spending time with good friends is the best way to banish feelings of sadness. But for some, including myself, this approach doesn’t always work. For those of us who do sometimes struggle with feelings of depression and anxiety, it’s vitally important that we acknowledge rather than hide the fact that we’re not feeling good and do whatever is needed to get ourselves through it. In my case, this sometimes involves spending lots of time alone and definitely not being around anyone I don’t know very well, as would have been the case had I involved myself in this year’s Christmas and New Year gatherings. However, in a culture obsessed with the pursuit of happiness, it can be extremely difficult to allow ourselves and others the space and the time to retreat when we need to.
The story we’re so often told is that smiling, thinking positively and spending time with good friends is the best way to banish feelings of sadness. But for some, including myself, this approach doesn’t always work.
Don’t get me wrong; I’m not saying that we should all be more miserable or that we should stop looking out for one another – I for one will always be enormously grateful for the effort that my friends and family make to include me in their plans, even when I’m being a grumpy so and so. However, feeling sad and needing to be alone is, at least for some of us, a natural and important part of both working through and overcoming negativity. Telling people that they should push their feelings aside because it’s Christmas or their birthday, or New Year’s Eve, and because these are times when we’re supposed to feel good, invalidates a fundamental and unavoidable aspect of the human condition. We simply cannot feel happy all the time, and sometimes we feel sad and solitary when we’re supposed to feel jolly and enjoy the company of others.
Whilst we may run the risk of disappointing those we care about if we choose to be alone, it is sometimes best, not only for ourselves but for everyone else, that we do just that. Some might argue that Christmas is just a few days of the year and that it’s selfish to not put our feelings to one side for the sake of those we love and care about. But does the fact that Christmas is a time of year when we’re supposed to think of others and feel happy mean that we should stop looking after ourselves? I would argue that it doesn’t.
Without proper management misery has the power to destroy us. And this is exactly why we tell each other to think positively and smile when we’re feeling down, thinking that if we pretend to be okay then we will avoid being completely consumed by our pain. But as dangerous and destructive as wallowing in negativity can be, taking a good look at ourselves and trying to make sense of what we’re feeling, even if we don’t like what we see, can sometimes help us to get back on track. So, as well as continuing to accept the support of our friends and family when we need it, it’s also important that we learn to allow ourselves and others the space to be alone and to feel miserable without guilt if that’s what is needed. This is exactly what I have done over the last couple of weeks. And I must say, I’m feeling all the better for it.
Before my dad died a few months ago, I had never experienced the loss of a close relative. I had, of course, been exposed to the grieving process through friends and family members who’s loved ones have passed away, but never had I felt the full weight of loss myself. Something that I’ve come to understand over the last few months is that, profound and consuming as grief is when it hits, it is by no means easy to articulate in words.
Part of the reason why grief is so difficult to talk about, I think, is that death itself is something that many of us are scared of, and that most of us try hard not to think about too much. And, unlike other emotional experiences such as love and joy, which are always welcome and even yearned for in their absence, grief is something that we hope to encounter as little as possible.
When we do think about death and losing those we care about, our thoughts tend to focus on feelings of sadness. But grief, I now understand, encompasses many other, sometimes conflicting, emotions. When I found out that my dad had died, and when I was told how it had happened, I felt deeply sad and disappointed that he’d decided his life wasn’t worth holding on to. On the other hand, however, I felt a huge sense of relief, not only that he was finally at peace after years of emotional turmoil, but that his often careless words and behaviour could no longer hurt those who loved him.
Unable to fully articulate my feelings in words, I’ve had to find other means of tapping into and expressing my grief.
Along with these conflicting sentiments came additional feelings of guilt, anger and shame, and to rationalise all of this was and still is incredibly difficult. Unable to fully articulate my feelings in words, I’ve had to find other means of tapping into and expressing my grief. One of the most powerful tools that I’ve discovered so far is, perhaps unsurprisingly, music.
Lebanese-born poet and philosopher Khalil Gibran famously describedmusic as ‘The language of the spirit.’ Only now can I fully appreciate this assertion. Feeling particularly low whilst travelling from Bristol to my dad’s wake in London last month, I remembered a piece that was first introduced to me during a yoga class last summer. I don’t often attend yoga classes, and I wouldn’t describe myself as an overtly spiritual person. But the first time I heard ‘The End of Suffering′ (produced by Gary Malkin) in the tranquil setting of the Pyrenees I couldn’t help feeling both soothed and enlightened by its gentle percipience. Listening to it through my headphones on the crowded Megabus that day, its effect was just as evocative and enduring.
Where the words to articulate how I feel about my dad’s suicide often escape me, this piece of music speaks a language that my heart understands, mirroring through its poetry the complexity of grief to open, reach in and draw out of me all the pain that rationality can’t understand.
Like my dad, I’ve always held a deep appreciation for music. Never did I imagine that I would find such comfort and catharsis in a single piece.
Those interested in guided meditation can listen here to a second version of ‘The End of Suffering’ featuring additional spoken word by a Buddhist monk.
Having never broached the subject of hidden disabilities before writing this article, I really wasn’t sure of the best way to approach it. Nor was I confident about the appropriate language to use having very little in the way of other articles to refer to. However, I was also very excited to share my story because, whilst diagnoses of dyspraxia (the hidden disability that I am affected by) is on the increase, it’s still relatively unknown compared to other specific learning disabilities. Until fairly recently, in fact, children with dyspraxia were commonly referred to as having something called ‘clumsy child syndrome’—a rather simplified term to describe a complex and wide ranging set of difficulties.
The response I tend to receive when I tell people I have it is, ‘Ooh, what’s that?’ So, for those reading this who don’t already know, dyspraxia can be defined as a common developmental disorder affecting fine and/or gross motor coordination, as well as speech and language in both children and adults. For me it’s a condition characterised by awkwardness, muddle-headedness, and an inability to play group sports. And like all specific learning impairments, it also comes with its fair share of anxiety and embarrassment.
Like many people affected by specific learning disabilities, school was a bit of a challenging environment, made even more so (I can gather now) by a lack of diagnosis and appropriate support. Despite being good at English and the humanities throughout my school career, I have vivid memories of desperately trying to sneak a peek over the shoulders of those sitting in front of me in class, having failed to fully grasp the task at hand and feeling too scared to ask for help for fear of looking stupid in front of my peers. In particular, numbers were and still are my nemesis, proving so alien to my way of thinking that tears still begin to well at the thought of having to undertake anything more than very simple calculations.
However, as a rather hot-headed and rebellious teenager with a complicated home life, I never associated my difficulties at school with anything other than disengagement. It wasn’t until I began studying for my degree in English literature years later that I realised there may be something else going on. Whilst being fully engaged and working hard to complete my coursework on time, I felt completely overwhelmed by the workload and soon became aware that I was struggling more than my peers to keep up. At the end of my first year I sought out an assessment and was finally diagnosed with dyspraxia at the age of 26. As well as receiving a grant for specialist equipment, including a laptop installed with software to help with the planning, execution and revision of essays, I was also offered coursework extensions and extra time in exams. I strongly believe that without all of this access support I would have completed my studies with a grade well below my level of ability.
What people can’t see is the absolute dread I feel when faced with certain tasks and the big bully that lives inside of my head and tells me over and over how stupid and incapable I am.
As an adult in full-time employment, the problem I’m currently faced with is how and when to disclose my difficulties to employers. Is it best to tell them at the interview stage so that they’re aware of my access needs, or should I wait until after I’ve been accepted for a position in case my impairments work against me somehow? Well, in a recent role within the arts industry I decided not to say anything at all, until I was finally forced to disclose when my manager became frustrated and angry with the mistakes that I was making. Being invisible, dyspraxia has a habit of making those affected seem rather careless and lazy, and this can cause employers to doubt potential and, in many cases, withhold opportunities for progression. I can’t help wondering whether this would still be the case were it a visible impairment.
Part of the problem with having a hidden or invisible disability, whether it’s schizophrenia, chronic fatigue syndrome, depression, anxiety, or a specific learning impairment like dyspraxia, is that you don’t necessarily look like you’re experiencing difficulties. So, as well as people asking me to explain what dyspraxia is when I tell them I have it, another common response is, ‘But you don’t strike me as having those kind of issues.’
And here’s where the heart of this article lies.
Being articulate, well-educated, and able to hide a lot of my awkwardness and anxiety means that from the outside I often appear confident and capable. However, what people can’t see is the absolute dread I feel when faced with certain tasks and the big bully that lives inside of my head and tells me over and over how stupid and incapable I am. Whilst I understand that these insecurities aren’t necessarily unique to people with learning impairments, I’m certain that experiencing difficulties with tasks and activities that other people seem to find easy does magnify the feelings of inadequacy that I experience on a day-to-day basis. And, whilst I can also appreciate that most people don’t feel confident all the time, it’s clear to me that some individuals, including myself, are far more affected by insecurity than others, whether visibly or not.
The reason I decided to focus this article on the issue of hidden disability denial is that, as well as having personal experience of having to explain and justify my own difficulties, I have recently become aware of a wider belief—which seems to have roots in the wellness community—that specific learning disabilities do not actually exist. A few weeks ago I came across an article related to this theory, and it left me feeling pretty angry. The condition it dealt with was ADHD and (without going into too much detail) the argument it tried to put across was that most cases of the condition are purposefully misdiagnosed in order to generate money for Big Pharma through the dispensing of costly medical treatments.
Now, it’s very likely that there is an element of truth to this; we all know how much money and power is tied up in the pharmaceutical industry. But what I absolutely cannot get behind is the idea that so many health care professionals across the globe are implicit in this corruption, or that the majority of people diagnosed with ADHD are merely imagining their difficulties and the benefits of the medication that is prescribed to treat the symptoms. It’s true that the numbers of children being diagnosed and medically treated for ADHD is on the rise (I’m not going to deny that medication being the first port of call is problematic), but rather than being wholly due to a money-making scam, this could also be because we now understand more than we ever have about the condition and are therefore more able to diagnose and treat it.
A shared experience amongst many of my friends is being told by their school teachers to stop being stupid and try harder in class.
This is of course an issue that will continue to be hotly debated, and I’m certainly no expert. But I strongly believe that if a child or adult is experiencing difficulties and has sought out a diagnosis then no one has the right to invalidate this by claiming that the condition doesn’t exist. A shared experience amongst many of my friends is being told by their school teachers to stop being stupid and try harder in class. Had more been known about the impairments they would later be diagnosed with this may have been a different story.
As well as invalidating the experiences of those affected by the symptoms of ADHD, the other problem with the article I read was that, whether intentionally or not, it implied that those who choose to take their medication are somehow implicit in the wrongdoings of the pharmaceutical industry. When asked, a close friend told me that after reading the article he felt guilty and ashamed to continue paying for and consuming his tablets.
However, my biggest problem with the article wasn’t so much to do with the implied misdiagnosis as it was to do with something far more insidious: the outright denial of the symptoms by which ADHD is commonly characterised. According to the author, symptoms such as lack of concentration, mood swings, hyperactivity, anxiety, and forgetfulness are not specifically related to ADHD, but a normal part of everyday life. What the article failed to grasp is the fact that it is not simply one or even a couple of symptoms that are experienced with ADHD, or any other specific learning disability. What is generally experienced is a complex set of mental and sometimes physical challenges that can have an enormous impact on an individual’s personal and professional life.
I can’t help wondering whether this article would have been accepted by the online community in the same way had it stated that wheelchair users aren’t really impaired and don’t really need their access equipment. Whether it’s a mental health issue, a neurological condition, or a specific learning disability, the impairments that hidden conditions bring can have an enormous impact on an individual’s quality of life. Rather than contributing to a positive and inclusive discussion about disability, articles like this one openly discriminate against those affected by suggesting that invisible impairments are not as complex or as valid as those that are visible.
This is just one example of the many ways that hidden disabilities are minimised and invalidated in contemporary society. And without more open discussion on the subject this sort of denial is never going to diminish. The important thing to consider when thinking about this issue is that things are not always what they seem. A person may very well look and seem as though they’re managing, but this doesn’t mean they’re not fighting an internal battle.
A documentary exploring the nature of ADHD and the neurological affects of the condition is available to view on BBC iPlayer. Those interested can watch here.