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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Life Updates

HEALTH UPDATE 2017

4 years later and I finally have the answers I’ve been waiting for.

After seeing a pain consultant at UCLH, I was told I had damage to my abdominal wall, most probably as a result of my operation in 2013. This would explain the consistency in daily pain and the multiple admissions to hospital. The methods of dealing with this are somewhat complicated – there is no “cure” as such, as surgery runs far too many fatal risks, not to mention the risk of furthermore pain. I’m on medication for chronic pain, and hopefully by steadily increasing the dose if I experience severe pain again, it should make a considerable difference to my quality of life. The only downside to the medication is their sedative effect, so I spent 90% of my day resembling that of a zombie. I’ve now been referred to the complex pain team at UCLH, where I’ll undergo physiotherapy to help live with the pain, potential local anaesthetic shots to numb the pain of my damaged abdominal wall and ultimately methods which will ensure I don’t have to visit the a&e department as frequently, and hopefully in time, at all.

Over the past 4 years, I’ve gone through just about every single test possible for abdominal pain and the lack of answers completely destroyed me. I was living in a constant state of not knowing what I was suffering from, with doctors, or “specialists” in the private healthcare field not willing to act on anything. 2015 was by far the worst year of my life – 11 admissions to a&e over 12 months, where they could only manage the pain with opiates left me feeling at my lowest. Many people, healthcare professionals included, underestimate the debilitating impact of chronic pain. I’m always asked to rate my pain – how do I measure it, when I’ve experienced the worst kind this world has to offer? To this day, I’ve never measured my pain at a 10/10 because I’ve become so desensitised to the excruciating nature of a relapse.

I’ve always had people commending me for my bravery and strength, but ultimately this is 90% of the time a facade to help me survive. I’m so far from brave, compared to those who suffer from terminal illnesses and what not. There are days where I’m overcome with anxiety over how I’ll live with the pain when it gets bad, and how isolating the pain can be. There are days when I criticise myself for pitying myself when I’m so lucky compared to the plight of others. I’m filled with guilt at the sacrifices my family have made for me, and the pain they’ve had to helplessly witness, all the while encouraging me and supporting me. But I’ve slowly come to realise that it’s perfectly okay to feel sorry for myself here and there. It’s okay to feel like absolute shit. It’s okay to cry my heart out. Because pain is soul-destroying.

Ultimately, I survived these 4 years solely because I have an incredible support system. My immediate family and close friends have saved my life.

So, thank you. Thank you to the specialists at UCLH for giving me the answers I’ve waited so long for. Thank you to my close friends who’ve shown me so much support recently. Thank you to the friends who’ve become family. Thank you to each and every one of you who have contacted me on here and offered advice, encouragement and so much more. And thank you, a thousand times over, to my family.  God bless you all.

It gets worse before it gets better, but it does get better.

A x

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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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Life Updates

HEALTH UPDATE: JULY 2016

It could be worse.

That has pretty much been my life motto for the past two years and it’s actually worked out considerably well. As a result, I’m less prone to wallowing in self-pity, although perhaps I can thank my job for that, too.

After 20 months of uncertainty, pain, hospital admissions and tests, I’ve been told there’s nothing that can be done for my current health situation as there are too many risks associated with surgery. (Last resort and what we were subtly hoping for as a miraculous cure) There’s no medication left for me to take; I’m already on painkillers, plus chronic pain relief before I go to sleep, so a medicinal approach is also out of the question. Doctors have now suggested a “holistic approach” to dealing with the pain and symptoms that come with this confusing/unique health condition.

I’ve been a little weary when it comes to the term “holistic” because it felt like a cop-out when it was suggested on the post-consultation report. Almost like a “we couldn’t help you surgically, so try some homeopathy or yoga.” But looking into it further, it’s worth a shot considering we’ve exhausted every other avenue.

I guess the worst aspect of living with this/these health condition(s) is the absolute loneliness that comes with having to live with it. Of course I am incredibly blessed and lucky to have such supportive parents and family, as well as exceptional friends who have stood by my side since the day I was first hospitalised. Ultimately, however, having to live with ongoing pain and knowing there’s no real cure out there for me now is the worst thing. Realising that I’ve been through so much pain, horrid health relapses and symptoms, only to be told I should ‘go herbal.’ It’s awfully lonely; having to summon up the courage to say “okay Anisah, you’ve been through this before, you can get through this now.” Accepting that pain is a part of my life I just have to live with. When I have to leave a room, or take a break from work, or even duck to the loos when out with friends, I have to pray and beg that whatever’s causing my abdomen grief will just go away. “You just have to ride it out” is infuriating to hear; why me? After everything, why am I still suffering? Will it ever go away?

It sounds terribly despondent, I know, but I guess the lonely aspect of a health condition is something I’ve not touched on before, yet is imperative to consider nevertheless. It interlinks strongly with your psychological state of mind too, almost like a vicious circle. When I experience physical pain, my anxiety levels increase and I panic a little. As a result of living with these health issues, I’m prone to periods of feeling low and anxious for the future. I’m desperately hoping that a holistic approach helps me physically and mentally, because I am drained in both senses!

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” – Kahlil Gibran

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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