It’s you I’m thinking ofJo Shapcott, Of Mutability
[Writing this post took all the balls in the world for me today.]
On the 18th February, I cried for hours. And by hours, I mean from approximately 5pm to 1am. It then concluded with a grand finale of a monumental panic attack in which I forgot how to breathe and thought I was literally going to die. (PSA: I know I have the tendency to be dramatic but this is actually in no way exaggerated!)
This is what mental health looks like.
I have a terrible habit of bottling up my emotions, and I guess that partly stems from being an only child – I am in no way blaming anyone but myself for this terrible habit! It’s a life-long lesson I am slowly beginning to fully comprehend. I also suffered an extraordinary amount of psychological abuse during high school (ironically, mostly from teachers), and that impacted both the perception I had of myself and the way I lived my life. My social anxiety most probably is a result of being punished weekly at secondary school by teachers who viewed my insubordination as a threat to their authority. (Fun fact: I hated teachers who thought respect was their automatic right, simply because they were responsible for our academic education.) They broke down every single piece of me until my identity was entirely consumed by the failure they enforced upon me. Now, I know it sounds like I’m bitter and resentful, but I do believe I have earned the right to own the effect they had on me. I never truly accepted my secondary school experience as traumatic until I developed an eating disorder at the age of sixteen.
My general anxiety (which I define for myself here, through my personal experiences which are in no way universal, as random bouts of extreme nervousness, worrying excessively over minor, minor issues which I exacerbate in my own mind to become something huge etc.) is a part of me I’ve learned to live with for a long time. It’s like a scar; I know it’s there, I can feel it with me all the time but more often than not, I’m able to live peacefully without it sabotaging my way of life. I guess on some level, everyone has a form of general anxiety. Some have it worse than others. However, there are days where I can feel my anxiety digging its claws into my skull and tearing everything to pieces. I’m left feeling exhausted, worn out and emotionally numb.
This is exactly what happened on the night of the 18th February. Being as busy as I am, amidst the chaos of my final year of university whilst simultaneously juggling a job, I don’t have time to process my own thoughts – the good, and the bad. Having a health condition which causes moderate to severe pain daily also massively plays into my anxiety, and the two are inextricably intertwined. Undergoing my surgical procedure nearly one month ago, and having to deal with the agonising consequences of a rather horrendous recovery whilst trying to catch up on missing a month of university took quite a toll both physically and mentally. That night, I broke; I felt my body physically break. I cannot quite describe it in any other way. I screamed obscenities at the ones I loved the most, blamed the world for my problems, cried then felt absolutely nothing. It’s only now, looking back, that I realise just how painful that breakdown was. I saw no way out of my own head; I was drowning in my thoughts and that manifested into physical suffocation. I could not breathe.
I guess the aim of this post is to draw attention to the silent sufferers of mental health and to raise awareness. If you’re struggling, drop me a message. Drop someone a message. Don’t suffer the weight of your world on your own – God, I cannot stress this enough. Don’t be someone you’re not just to impress a few people. The social concept of ‘fitting in’ is so fucking overrated. Don’t suffer in silence. For so long, I created a facade of myself: one that’s strong and fearless and brave and all of that bullshit. But there are times like this where I remember just how vulnerable I am. I’m not anywhere near as strong as I want to be. I’m not always the person you see on Instagram every day. And that is so, so okay. It makes me human. 6 years on from the operation that changed everything (gallbladder cholecystectomy) and I’m still learning so much about myself.
I’m done with pretending to be brave for the sake of others. I’m done with pretending to be someone I’m not, and it’s truly the most wonderful feeling in the world. At 23, I’m finally finding myself. I’ve spent 6 years trying to forget the pain I went through, but I’ve never really forgiven myself for it. My body has been fighting itself for years, and it’s time I showed it a bit more understanding.
A little more self-love.
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.
Featured image: Afflicted, Netflix Original Series (2018)
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.
Everyone I love reminds me of my bravery, but here’s a little secret:
Hidden deeply within the depths of my bravery
is a fear that consumes me.
A fear that time is running out,
and so is my luck.
My proudest moment of 2016 is knowing
I overcame the worst
life could throw at me.
I broke into
god knows how many pieces,
I put myself back together.
If that’s not my greatest achievement
I don’t know
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.