Current Affairs, Original Writing

‘Afflicted’ – A Netflix Original Series

I did all of this work just to get sick and not be able to live my dreams

A new Netflix series aired recently surrounding the stories of people suffering from chronic illnesses, undiagnosed or “unspecified” by medical professionals. Symptoms were extreme, leaving most of the participants of this docuseries unable to perform any of their daily activities.

Each person differentiates themselves from another through their symptoms, and the symptoms present themselves as different illnesses entirely – from the offset. The words “psychosomatic” and “Lyme Disease” are thrown around often through the episodes, suggesting a potential link between the participants, their symptoms, and the disease. I’ll leave the opinions of other participants to the general public, however. There’s one person in particular that I want to focus on.

We’re introduced to Jake in the third episode of the docuseries; an aspiring musician whose career was suddenly cut short due to the onset of symptoms linked to Lyme Disease. The beginning of the episode features Jake’s struggle in articulating his current symptoms to the camera, and as the episode progresses, the viewer is lead to understand the events which took place in his life but most importantly, how his life has been dramatically impacted because of his illness.

22 minutes into the episode, I had to stop watching. Any documentaries featuring people struggling with chronic illnesses hit a nerve, so to speak. The intention of this post, however, is most definitely not to associate my condition on any kind of level with those in the series. This post was to highlight the unimaginable trauma of those who may look physically well but are struggling with an uncontrollable and unpredictable illness, of which there is no cure yet and treatment which consists entirely of trial and error. Watching a relatively young man’s life turned upside down due to something both entirely out of his control and entirely unanticipated is definitely heart-wrenching. To see the ambitious light in his character gradually diminish – it puts everything into perspective.

Learning about stories such as that of Jake’s really makes me realise how lucky we are, how lucky I am. I can call myself a survivor, but am I really battling a condition of no known cure? No. Has my life been stripped from my hands overnight? No. I agree with one thing, in particular, the docuseries mentioned; those who are sick have a tendency to associate their identity with their illness. They’re not just a person anymore – they’re a sick person. I, too, have fallen victim to enshrouding myself in self-pity when, in retrospect, my health is improving, I am most certainly not bed-bound, and I do not rely on medication to essentially live. Those who have suffered from chronic illnesses, and/or chronic pain can definitely identify with the overwhelming trauma it leaves one with, even once they’ve overcome the worst of it. And perhaps this motto isn’t the healthiest to live by, but the documentary showed me how people undeniably have it much worse than people such as myself. Granted my health isn’t the best it could be at the moment, I’ve learned that relatively stable health is often taken at face value.

I intend to bring myself to complete the rest of Jake’s story. And he’s taught me just how lucky I truly am, to be able to live my life to its fullest potential – he’s given me perspective. I sincerely hope from the deepest of my heart that his story has a happy outcome.

The transience of life is all too often overlooked and underestimated. We have an overwhelming ability as a society to conceal ourselves behind issues which are ephemeral in comparison to others.

The series, in general, verges on the side of sensationalism as opposed to information and fact, but the stories of the participants raise some interesting questions in relation to chronic illnesses, pain and an array of unspecified symptoms.

A x

Featured image: Afflicted, Netflix Original Series (2018)
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Original Poetry, Original Writing

Surviving 2016

My proudest moment of 2016 is knowing

I survived.

I overcame the worst

life could throw at me. 

I broke into 

god knows how many pieces,

but,

I put myself back together. 

If that’s not my greatest achievement

I don’t know

what is. 

 

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Life Updates

An Open Letter to My Parents

The past few years have been turbulent, both physically and mentally for myself and those around me; the constant rejection of the answers I was desperately looking for, the reluctance to be treated for whatever is going on inside me, and the anxiety surrounding being in pain everyday were painful to say in the least. However, with the news that the investigations into my health conditions have now come to an end, I’ve stopped hoping for a miracle, adopting a rather more realistic approach to dealing with the pain. I’ve made peace with the idea that I’ll have to treat these symptoms, potentially for the rest of my life, rather than having multiple doctors, surgeons and specialists poke me here and there, performing countless tests.

Those closest to me will know how much I despise pity and sympathy: my health is something I have yet to come to terms with (I know, I know, it’s been 4 years) so handling other’s reactions isn’t something that comes easily to me when I don’t really know how to handle it myself. However, the one thing I have always been grateful for, but now more so than ever, is the relentless support of my parents.

During my darkest hours, they shared my pain and agony. In 2013, they shared my fear of going under the knife for the first time in my life. But they put aside all their own emotions to support me, comfort me and encourage me. Many will comment on my bravery in suffering from a debilitating health issue, but I believe the bravest of them all are my parents, for being strong for me. I remember waking up from the general anaesthetic after my operation and hearing my mum sob because she couldn’t handle the sight of me being attached to wires, an oxygen mask, and tubes attached to me. This was the first time I’d heard her cry since I was diagnosed, and in many ways that was more painful than the actual agony of a gallbladder attack. As parents, there’s an assumption that you have to be strong for your children, and my parents exceeded that. I know for a fact that their support has helped me live through this, and without it, I don’t know where I’d be.

It’s time for me to stop thinking about how I’ll survive living with whatever I am going through, but rather focus on how I can live my life to the fullest with it. Perhaps I was justified in my selfishness regarding the whole thing – after all, it was my illness, something only I was experiencing. But in many ways, my pain is also my parents’ pain. I haven’t given them enough credit for helping me survive the worst days of my life. I owe them everything for helping me keep it together when I was at my lowest points. Their ability to see the light at the end of the tunnel when I’m blind to it myself is a gift they are blessed with.

So thank you both, for transforming me into the strong woman I am today. I am a survivor because of you. You love me even when I’m at my worst, and boy am I an absolute nightmare. Through your care and devotion, you have created a human being who is prepared to fight whatever life throws at her head on. You have given me the strength to survive my darkest hours, and it’s only your words which help me overcome them. Your strength and courage lives within me, and I am so proud to call you my parents. I don’t know what the future holds, but I know I’ll be able to embrace it because of you.

A x

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Original Writing

Health Is Wealth

There are times when my health brings me to my knees, both physically and mentally. Sometimes, it does feel like things will never get better – the risks, the waiting, the bad news, the symptoms… It’s hard to put on a brave face when you’re looking at the possibility of a future of pain worse than I’m enduring now.

But then I realise: other than my pancreas being a slight disaster as of recent, and my bile duct muscle failing to work properly, I’m pretty healthy. I can walk, run, go about my daily activities properly, albeit to some extent. My condition is not terminal. I’m not going to die. (Hopefully!) There are people out there, some much younger than me, who are going through traumatic experiences, unbearable pain and are suffering incomprehensibly from terminal diseases. Their chances of survival are increasing with new technology and research dedicated to finding cures, but they’re still low.

Family and health are the two most important things in my life, and ultimately, I have both. My body may not be working perfectly, but it’s working nevertheless.

“Strength does not come from physical capacity. It comes from an indomitable will.”
Mahatma Gandhi 
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Current Affairs, Life Updates

Eating Disorder Awareness Week 2016

This week marks Eating Disorder Awareness Week. This month marks 10 months since I beat my eating disorder.

I guess the first stage of overcoming it was actually coming to terms with having an eating disorder; admitting to myself that I was struggling to cope with the operations I’d had the year before and just missing out on my grades to get into uni. In many ways, starving myself was a coping mechanism as well as a method of maintaining control over my life through my body weight. So admitting to my parents and my psychotherapist that I had a problem was the first step on the road to recovery.

The second step was finding the courage to seek professional help; that in itself took the longest. My mum’s friend is a therapist and recommended a few private professionals as the prospect of being put on a waiting list when my condition was getting so serious was impossible to accept. After flat out refusing to see/talk to anyone about my problems for well over a month, I realised I’d either have to pluck up the courage to talk through my anxiety and pain or spend the rest of my life miserable, isolated and starving myself until I was close to death/actually died.

My first session with the psychotherapist was incredibly daunting; naturally, every instinct in my body was telling me not to trust her because she was an outsider. My brain was screaming she won’t understand. I think she, too, saw my apprehension and helped me work through it by sorting through my personal life piece by piece. She began compiling a timeline of every significant event in my life, from starting high school up until present day. Of all things, I didn’t expect a chronology to be as helpful as it eventually proved to be, because once she’d organised key moments of my childhood and adolescence into categories on her timeline, it eventually unravelled what the cause of my anxiety was.

My anxiety had physically manifested itself into an eating disorder and the only way I could tackle the eating problems was to tackle the anxiety first. This was, and to some extent still is, incredibly difficult. Seeing a therapist every week was incomprehensibly effective as she helped me trawl through the trauma I’d experienced essentially since high school, and soon this slow but steady psychological improvement was reflected in my eating habits. The root of my eating problems was ultimately a lack of self esteem, originating from mistreatment and psychological trauma at my high school. Teachers and a few students made me feel worthless and I guess I spent 6 odd years growing up with the belief that I was nothing but a failure. Once my therapist helped me through this harrowing acceptance of my high school experience, I began to accept other aspects of my life, too. For example, my physical health deteriorated rapidly in 2013 and the trauma of relentless, disabling pain also took its toll. Over the course of a year, I managed to work through the psychological aspects of my life which were contributing to a lack of self esteem and my anxiety attacks. 

The other fundamental factor of overcoming my eating disorder was accepting that my body was a thing to be loved, not loathed. I was so desperately trying to achieve an ideal body weight that I lost all sense of rationale. This ideal body weight soon became dangerously life-threatening which is when my parents confronted me about why I was so thin, and why my hipbones were sticking out through my jeans. I was incredibly careful to hide everything from them; from putting food wrappers in the bin despite eating none of the contents, to wearing baggy clothes. (thereby hiding my weight loss) I used to starve myself from morning until 5pm, binge on whatever junk food I could find, only for it all to come back up because my stomach was shrinking and couldn’t tolerate a massive influx of food in one go. Due to my inability to keep food contents inside my body, I was rapidly losing weight but no one really noticed, so I kept pushing to lose more. Over the course of the year that I received help for the eating disorder, I learnt to love myself a lot more. Surrounding myself with good, positive influences and detaching myself from toxic, negative people is ultimately what saved me. 

It’s incredible how many people compliment me on my body now, three sizes up from what I was two years ago. It’s also incredible how far I’ve come, emotionally and physically, since high school. Beating the eating disorder not only saved my life but it also helped me get over the trauma of my high school experience. It made me realise that I’m a survivor.

I cannot emphasise how important it is for people to show solidarity amongst understanding and compassion for those suffering from eating disorders. Sticking around for someone can make a world of difference. Whether it’s a shoulder to cry on or a hand to hold when times get tough, just being there is what helped me through my darkest hours. Cowards walk away from people in desperate times of need. Don’t be that person.

Here’s a list two websites which helped me in times of need, too:

https://www.b-eat.co.uk 

http://nedawareness.org

A x

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Current Affairs, Original Writing

Mental vs Physical Health

I was reading up on the law recently (as one does in their free time, of course) and something struck me as particularly concerning.

Context: I was looking to apply for my student loan for this September when I visited the Disability Allowance section. I have no physical disability (minus asthma but I don’t really consider that a disability in the scheme of things) but I wondered if suffering from mental health conditions qualified as a disability in the eyes of the law and if it did, to what extent?

Here’s the tricky part; it does. Kind of. From studying law at college, I remember how important it is to pay close attention to the use of particular diction in legislation. For example, the Equality Act 2010 specifically states that a disabled person must “have an impairment that is either physical or mental… must have adverse effects which are substantial, long-term and affects normal day-to-day activities.” If all factors stated above are met, the person is thereby classified as disabled, legally. But what is classified as an “impairment?” Can mild forms of mental health conditions still be classified as impairments?

The issue I have with this legislation is that there is an awful lot of grey area with regards to what can be classified as a disability and where the line is drawn between disability and an “impairment” which does not warrant the term disability. Usually, an act will define its own terms. For example, they’ll say something along the lines of “used in its ordinary meaning.” However, there is an element of subjectiveness and discretion in this act. Nevertheless, there is very little subjectiveness associated with physical disability. In the act, examples are given of where there should be no deliberation over disability; specifically, an obese woman who has trouble breathing because she’s overweight. The law  points out that the reason behind her breathing difficulties (her obesity) should NOT be referenced. She is automatically classified as disabled, due to her breathing problems. Fair enough.

However, when looking into the mental health aspect of this law, I came across a sticking point. As per the act, in order to be classified as disabled, one’s “impairment” must affect one’s daily life as well as being a long-term condition. In particular, the act uses an example of social anxiety and panic attacks; it states that if a person’s anxiety is so severe that it warrants having to travel at certain times of the day to avoid the rush hour then yes, they are classified as disabled. However, if one doesn’t need to make changes, to their routine for example, in accordance to their condition, it is not classified as an impairment, nor is it classified as debilitating enough to warrant the term “disability.”

This stood out to be as considerably worrying due to the high percentage of people who suffer from mental health conditions in silence because they’ve known nothing else. For sufferers of severe mental health conditions, there are certain requirements within the field of treatment which contribute to their condition being a disability. But what about those who suffer from mild anxiety, mild social anxiety, mild depression etc? Where do they stand in the eyes of the law? Where do I stand, someone who is still overcoming their health condition day by day, without altering anything in their routine?

Ultimately, this all comes down to the fact that mental and physical health will never be treated equally. Ironic, considering the name of the above act. The act states that cancer and HIV are automatically classed as a disability (rightly so) thereby reiterating a distinction and distinct lack of equality between mental and physical health. There should not be any grey area in the law regarding mental health, if there is no element of subjectivity for physical disabilities. That is unfair not to mention unequal. Until schizophrenia is treated with the same importance as cancer, we will be stuck in a unequal society, trapped by the stigmatisation of mental health.

A x

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