Anxiety Makes Me Pull My Hair Out

When I was in school, studying for my exams felt like the most important thing in the world. It’s hard to explain now that I have completely left academia and am more emotionally distanced from that place, but I quickly became convinced that my existence only mattered if I got good grades, you know? As regular readers of this blog will already know, I was somewhat surrounded by people that didn’t believe I belonged in the mainstream education system, most especially my peers and teachers. With this, of course, there was always something to prove. Nobody was at all sure that my life would amount to anything meaningful beyond my schooling, so this was the one thing that I had. My one chance to show everyone that my brain didn’t always let me down. My one chance to provide them with evidence that I wasn’t completely useless. Although my family were endlessly supportive regardless and this pressure came from nowhere except myself, it was a level of stress that I wasn’t equipped to handle in a healthy way.

Eventually, I started pulling my eyelashes out, which is about as sexy and glamorous as it sounds. I couldn’t explain why, I just knew that this behaviour made everything feel more manageable for a little while. However, it wasn’t long before this was bad enough for me to develop infections even more frequently than I’d otherwise been used to, so I had to stop. I had to find another way to feel in control. Unfortunately, though, the story doesn’t end here. It turns out that this type of thing can very easily twist into a compulsion. Translation: stopping is far from simple — especially when you’re a teenager. It’s actually quite scary.

I was okay for a couple of months, if I’m recalling properly, then I moved onto my eyebrows. I can’t remember what triggered this exactly, but I was able to rationalise it in the beginning: just like waxing, if I can manage not to get carried away. Without even always being consciously aware of it, I have now been pulling my hair out in various places for the past eight years. What started as a way of finding control within stressful situations has instead started to control me. Whenever I experience any particularly overwhelming emotions (good or bad), this is where I turn, even if only through boredom.

A drawing titled “new years resolutions” by @crazyheadcomics on Instagram. It’s a piece of paper on a yellow background, which reads as follows:
“be nice to myself
stop putting unrealistic expectations on myself
aim for progress instead of perfection
do life at my pace
recognize the small cozy moments of everyday life
ask for help when I need it
get through the year the best I can, and cheer myself on at every step”
I’m leaving this here as a reminder for myself and everyone else. Let’s try and be gentle with ourselves, friends. You can follow the artist, Matilda, on Instagram here.

So, why am I choosing to write about it now, with no inspirational story of recovery or overcoming hardships? Because in 2022, I’m determined not to run away from my problems — or hide them in order to make my presence more digestible for everyone else. I intend to be painfully honest about these things, even when they’re not pretty. I intend to set myself free from shame. Mental illness can be messy sometimes — that’s always important to talk about, even before it becomes cool in October. It’s hard to be a disabled person right now, let’s be honest. Still, this is me, deciding to take back power and believe that my beautifully complicated self is worth investing in.

Megan, thank-you for always being so open about your own journey and inspiring me to be brave for a second, even without realising it. Imogen, thank-you for the pep talk when I got scared to post this. You are wonderful. xxx

Sometimes, Being Disabled Makes Me Sad (& That’s Okay)

Recently, I started talking with a disabled friend of mine about grief. Not the traditional kind, which is perhaps what makes it even more misunderstood and difficult to talk about. Instead, this feeling attaches itself to the very essence of our hopes and dreams, which are often made somewhat impossible when you exist within a body that refuses to cooperate. Being aware of this, yet simultaneously unable to do anything about it, can be really heavy to carry sometimes.

I have been disabled for my whole life, so it might be easy to assume that I have never had to shift my own sense of perspective. I mean, thinking everything through on a practical level is surely just a sensible thing to do, right? In truth, when I was growing up, I could never imagine living further than past the next day. Even now, whenever anyone asks about my hobbies, I don’t have much of an answer. I promise that I don’t just say this in an effort to sound quirky. My days are almost always very mundane. I spent so long focused on surviving, I never really expected that I would ever dare to hope for more. I never really expected that I would experience any consistent joy. Similarly, other people have never really known what to expect from me, either. Throughout my life, I have always seemed to find the intimidating balance between able enough to recognise my strengths and too disabled to actually put them to use. Even aside from the obvious physical limitations, just attending school every day would give me enough anxiety, it was hard for anyone to believe that I would overcome it enough to ever properly function like an adult. This idea was very easy for me to internalise, as I have written about before (albeit badly). Soon enough, I started to believe that I would never be Good Enough at anything. Sure, I completed a degree and attempted a postgraduate, but all of this was simply to delay what felt inevitable: that I would ultimately end up not doing anything. At first, I thought this might actually be fun. I mean, who doesn’t dream of having endless free time? The reality, though, is very boring.

On a white background, there is: a cartoon drawing of Moss, a nonbinary person with ginger hair and a blonde fringe, falling through a hole in the sky on a sunny day. They are naked and about to land on a blue hospital bed, where there is a blood bag ready for infusion. In the right corner, there is an artist credit symbol for “little jaybird 21”, in reference to their Etsy store.
This drawing depicts the vulnerability that is so often associated with being disabled and chronically ill. How easy it can be for these diagnoses to define us. How hard it can be to recognise that we are not burdens. You can follow the artist, Moss, on Instagram here.

As I have found myself moving forward with a healed heart this year, it has also been hard to know where my boundaries are and what to do with them. I have had to fight every day to accept these limitations without allowing myself to become consumed and defined by them, which is far from easy. Having a disabled body means proving yourself over and over again. Working extra hard to prove that we deserve to take up space.

A few months ago, I was having a casual conversation with my dad when he mentioned that I would have definitely moved out of town to attend university, if I hadn’t been disabled. I have the fiery spirit that makes this feel like a statement of fact – a mere observation of the direction that my life would have taken, if my body had awarded me different opportunities. I know this, of course. I have always had a very independent mind and taken great pride in my ability to have individual opinions, away from the influence of other people. It feels like I have always been destined to take my own path, you know? So, why did hearing these words out loud leave me crying in the bathroom for half an hour? Side note: I can laugh about it now because it was the most dramatic kind of crying, but still, I was genuinely devastated. Let’s unpack it. I know that I can do these things. I know that I am capable of more – for myself. But I also know that it takes the most intricate planning and there will be barriers every step of the way. I know that some things will be too hard. That some options just simply aren’t available to me. But, most importantly: I know that I can live a beautifully fulfilled life regardless. It’s okay to wish that getting there could be easier for disabled people, though.

To Zoe, I hope that reading this gives you permission to feel sad, whenever you need to. xxx

How to Handle Having a Disabled Child

Recently, someone told me that they wouldn’t publicly celebrate having a disabled child. More than that, they told me that this supposedly joyous event would be tarnished by thoughts of guilt and shame — almost as if it was some kind of personal failing. This conversation has been holding hands with the dark part of my brain ever since, in all honesty. However, it has also brought some empowerment, weirdly enough. I mean, it’s interesting, isn’t it? Despite the fact that I’m a disabled person, it still felt okay to share these feelings with me, perhaps because it’s unfathomable that I wouldn’t resent my existence in the same way that everyone else does. Surprise! I am, in fact, thriving. It’s possible to be happy even when the rest of the world expects otherwise, you know?

This feels like an important message to put across simply because it’s impossible to pretend that it’s an isolated opinion. It runs through the very fabric of our society, often without most people even acknowledging that it’s deeply problematic. Before you say it, I’m not just being dramatic. Throughout my education, there were several moments where I would have to sit and listen as my peers were asked to debate whether or not disabled lives were equal to their own. Some of the responses were, frankly, jarring and left me anxiously picking my fingernails every time.

I would tell myself repeatedly that it’d get better with age and maturity, which I allowed myself to believe until starting university. During one of the first icebreaker social events, someone immediately asked if I was adopted, without doing the same to anyone else. I laugh whenever I think about this, because even if it had been true, it’s still absolutely none of their business. The meaning behind it was clear, though: they couldn’t allow themselves to imagine that my biological parents would want to keep me around, before even knowing anything about me. At the time, I was having many different conversations with members of staff about only managing to build one strong relationship on campus. I was always told “everyone probably feels uncomfortable around you and wants to avoid saying the wrong thing, so they have just decided to avoid saying anything at all”. Not for the first time, I was made to feel like all of this stuff was my fault and not something that could be fixed by anyone else.

Together, all of this becomes an attack on the very essence of my being. Writing is the only way that I know how to fight back in these situations, so here we are, once again.

A screenshot of a Tweet by Jenn M. Jackson, which reads: "Nothing I accept about myself can be used against me to diminish me." - Audre Lorde”
I will not be diminished. The lives of disabled children can be (and are) filled with joy. That should never be something that any parent regrets.

I am eternally grateful to my parents for choosing me every day, even when it meant making sacrifices that wouldn’t otherwise have been expected of them, especially during a time where there was significantly less support available. Fun fact: Cerebral Palsy is widely considered to be a paediatric condition. I’m still waiting to be magically cured since reaching adulthood, though I haven’t had any luck yet. In all seriousness: it does mean that we have had to handle a lot by ourselves over the last couple of years, but my life is still important. My life is good. Having a disabled child is not an overwhelmingly negative experience, even if it doesn’t meet your unrealistic ideals around what a family should look like. Disabled children deserve to not spend their time consumed with feeling like an unwanted burden. Radical, I know.

PS: I wrote a piece on accessibility for Scope, which you can read here, if you feel like being a massive nerd about it. I am changing the world, one blog post at a time. xoxo

Challenging Accessibility in a Global Pandemic

The world has always felt like a very scary place for me to exist within. For the longest time, it was dangerously easy to internalise this as being my fault. I was convinced that all of my problems would be solved, if only I could learn to be slightly less socially anxious, you know? However, I am starting to realise that these feelings have been perpetuated by a desire to shrink myself and ensure that my needs didn’t inconvenience other people, which I refuse to do anymore. So, I’m going to write about a few experiences where inaccessibility hugely damaged my quality of life, in ways that the general population has probably never even had to think about before. Maybe you’ll feel called out for not questioning this stuff on a daily basis, but I want you to know that it’s okay. I’m not going to be invisible for another moment longer. Let’s all agree to do better, moving forward.

I will never forget the time that an old friend had a birthday party during our teenage years where all of the guests (also my friends) were told: “don’t tell Danielle. I’m not inviting her because my house isn’t accessible and I don’t want her to feel left out”. Spoiler alert: I heard the gossip pretty quickly. For future reference, it’s always nice to have a conversation and know that someone is thinking of me, rather than to feel very intentionally excluded. I don’t expect people to centre their entire plans around my existence, of course, though it would be cool to feel like my presence matters enough to warrant some consideration. Because that, I suppose, is the entire point: disabled people’s lives do not matter enough within society to earn a second thought from those that the issues do not directly affect. We are not invited to take up space in pubs and clubs, for example, because we don’t belong where everyone else goes to have fun. Well, frankly, I have had enough.

As another example: when I started college and finally found somewhere to properly fit in, I was delighted when a group of new friends asked me to hang out with them one evening. Although the gesture itself might sound small, let’s remember that it hadn’t happened many times before, so this immediately felt like my life had reached a turning point for the better. Additionally, these people are lovely and considerate, so even made a phone call to our chosen venue to check that everything was wheelchair-friendly. After being given assurances that there wouldn’t be any problems, I was safe and ready to start enjoying myself. Unfortunately, though, the story doesn’t end there. When we arrived, it became apparent that there were stairs by the entrance and no ramp available. Needless to say, I went home and tried to pretend that it was no big deal.

A few years later, I wanted to take a bus from university campus to the centre of town. Public transport generally stresses me out, but my friend was involved with a local art exhibition and I wanted to be supportive. Besides, there’s nothing wrong with trying to be a bit more independent, right? On this particular day, however, the ramp was broken. Eventually, this led to some well-meaning strangers attempting to push me onboard instead. I have nothing to say about this, except: don’t touch mobility aids without consent, people. In response to all of this, I simply left the scene very quickly and cried to my mum about it later. Every single time that I have tried to be like everyone else, something goes wrong, leaving me unnecessarily vulnerable.

A screenshot of a Tweet by Lucy Dawson, which reads: “was just sat thinking gosh I hope the world doesn’t forget about us disabled & chronically ill ppl when the pandemic ends but then recalled that much of the world has yet to actually remember us in the first place so anyway. AS U WERE, LD. X”
Just don’t forget that disabled people exist. It doesn’t feel like too much to ask.

Interestingly, although the world’s current circumstances are overwhelmingly horrific, this pandemic has forced the world to become more accessible. Classes have been moved online with relative ease (thanks to the lecturer that told me this type of thing would be too complicated and unfair on everyone else when I was very unwell), working from home is now more socially acceptable and there has been an increase in job opportunities for those with limited mobility or fluctuating health conditions. Not only that, but social events are almost entirely virtual, which takes away many of the physical accessibility concerns for disabled people. In short, now that these options have been made available, I refuse to watch them be taken away entirely just because they make everyone else feel as if life is not being lived to the fullest. There has to be some kind of balance, which we should all be determined to find.

A screenshot of a Tweet by Charis Hill, which reads: “Hey folks who want everything to go back to normal:  Disabled people really need you to finally get it:  #BackToNormalIsAbleist”
The short version of this post is essentially summarised here. Enjoy.

To Kesia, thanks for being the inspiration behind this piece. You are a wonderful friend and I will forever enjoy our rants about social injustice. xxx

Learning to Love My Disabled Identity

For so many years, I thought that the key to survival was to run away from my disability, even if only emotionally. I thought that being known as the disabled girl would define my whole sense of self, ensuring that nobody cared about anything else. However, actively pretending that it doesn’t exist only served to send me into a spiral of self-hatred. Once this had begun, it was impossible to escape from and has constantly haunted the edges of my brain for almost a decade, if not longer. However, things have finally started to change over the past couple of days. It is like a dark fog has been lifted, simply from refusing to hide anymore and believing that I am capable of better.

Firstly, I learned that this blog has been viewed over one thousand times already. My weird little blog. If we know each other well enough to be connected on social media, then you probably already know that part. Truthfully, my head is still spinning. It is so difficult to comprehend how so many people care about reading my story, however briefly. My voice has always just felt pretty invisible, you know? It has often been like screaming into the void with nobody to hear. I can’t remember a time where I didn’t feel like a disappointing disabled person because I had nothing especially remarkable to offer the world. However, hitting this milestone proves my brain wrong. It makes me feel like the possibilities are endless, although that probably won’t last long. Still, maybe my existence doesn’t have to be entirely mundane after all. For example: generally, I hate talking about my career prospects because writing has always felt like home for me, but I have always worried that I’m not good enough for it to be achievable. Now, for the first time, there is a glimmer of hope. For the first time ever, I am actually proud of myself. Can you believe it?! If you are reading this, you have collectively changed my life and I’m never going to be able to repay you.

Then, I posted on a disability support group and requested friends in a similar situation. I have never done anything like that before because the idea of being so vulnerable makes me feel physically sick, but I was so horribly alone and sad. Being young and disabled can be horribly lonely and sad — that’s the unfortunate reality. Frankly, I had expected to be completely ignored. At this point in time, it really didn’t feel like I mattered very much at all. Instead, over two-hundred people responded. Over two-hundred wonderful and warm human beings from around the world shared their stories with me, opening their hearts up to a friendship. I still haven’t been able to message all of them properly in the way that I would like, simply because there are not enough hours in the day. Even so, it has felt like I have been floating on a happy little cloud ever since. Until this moment, I had never before been embraced so tightly for my differences. Collectively, these people have saved me in ways that I’ll never fully be able to articulate. I’m still not completely convinced that I deserve each and every one of their beautifully kind gestures, but I’m determined to earn them. Their unconditional acceptance has allowed me to begin extending myself the same courtesy and it so deeply liberating. Being disabled can be a beautiful thing, too.

Also today, I received my first vaccine against COVID-19. I haven’t left the house much at all in the past year, so I was really very anxious about this whole process, but it all went smoothly. Since the pandemic first began, I have wanted to crawl outside of my own skin and be someone else. Anyone else. I deeply resented having to take so many extra steps in order to simply stay alive, so this feels like the beginning of brighter days. As a side note: my favourite mental health YouTuber has now acknowledged my existence on Twitter twice, so it feels like I have made it. Kidding, but still.

A woman (Danielle, the author of this blog) is smiling in the car and wearing a seatbelt. She is wearing glasses, a red jacket and black vest. She has messy hair but she doesn’t care.
This bitch got vaccinated: a picture taken after my appointment.

In short, I am not completely comfortable as a disabled young woman yet. I want to feel attractive and confident, so there is more work to be done. But representation is important to that process, so I’m going to continue to write until the world has changed for the better. I might even start a YouTube channel. Maybe. If I can get over my fear of the camera. But probably not. If you want to help me on this journey, please sign my gorgeous friend’s petition for a film with a disabled Disney princess here and don’t watch Sia’s new film ever. Give disabled actors the roles of disabled characters and don’t be a dick xoxo

PS: an extra special shout-out to my pals Imogen, Sophie, Céline and Jasmine. You will have a piece of my heart forever.

The Trauma of Being Disabled

Unfortunately, being disabled is often associated with some level of trauma, even if only through the way that it has been perceived by society. On a personal level, research has shown that adults with Cerebral Palsy are statistically more likely to be diagnosed with mental health problems such as depression and anxiety than those without.

When I was fourteen, one of my doctors randomly asked about my social life. I had been getting ready to leave the appointment and the question caught me completely off-guard. I couldn’t understand why that was relevant in any way, so tried to lie and tell her that I was generally pretty popular. In reality, I was decidedly unpopular and very depressed about my whole situation, though I didn’t have the language to express that back then. Just a few weeks before, I had started seeing the school counsellor, but left after the first session and never went back. Still today, I remember her looking at me enter the room and saying: “well, I can already tell why you’re here”. The whole interaction was fairly damaging — it felt like the only thing that anyone ever saw when looking at me, you know? So, when this doctor asked about my social life, my mum wasted no time in exposing the lie and asking for help. They promised to refer me to a therapist that specialised in working with disabled young people, but I never heard anything. It has been almost nine years and there was never any follow-up.

When I was about twenty, I cried in front of my GP about how bad my body image was (I had been there for an entirely different reason). Afterwards, we both just pretended that it had never happened. In that moment, the only advice that she could give me was to “focus on self-care and personal grooming”.

As I reflect upon these two examples of pivotal moments in my life, it’s difficult for me to even place responsibility or blame onto these professionals in any way. See, the key problem is that nobody truly knows how to help or understand. They can’t really be expected to, since the circumstances are complex beyond anybody’s imagination, so it’s probably not something that they are faced with on a regular basis. However, what it also means is that I’m left unable to truly understand myself, either.

Last night, I had a lengthy conversation with my good friend, Sonia. She is very wise and brilliant. She reminded me of how illness and being constantly surrounded by ignorance (however unintentional) causes your brain to be shaped differently to everyone else around you. You know, studying in a mainstream school when there are so many voices insisting that you don’t belong in that space kind of forces you to become mature very quickly, for example. It is almost like a protective barrier, which only creates a lifetime of difference, since it’s impossible for anyone else to be on exactly the same wavelength without experiencing those things. This is day one of my journey towards accepting and acknowledging that I have been through some heavy stuff, but that things do have the capacity to be better. To anyone reading this, even if we are not in touch, I want to thank you for coming along on the ride with me.

Reminder to self: I do not have to be defined by other people’s shitty treatment of me. It is possible to grow past that and move forward. I am determined to make sure that these experiences mean something.

My next post is going to be about disability and identity. I have some feelings about that myself, but it’d be cool to get some other perspectives, too! If you are disabled or chronically ill and want to have a conversation about it, send me a message. Let’s change the world. xxx

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