nhs

My Endometriosis Story Part 3 – Acceptance of Incurability & Endometriosis Awareness Month

Endometriosis

Reading my most recent post on this site leaves me with a lump in my throat – I was 8 months post-op after my second horrific operation to remove widespread, aggressive stage 4 endometriosis and things were finally starting to look up for me. Long story short, the second operation gave me a whole new lease on life for an entire year, which I’d say was a pretty good run.

I’ve always been hyperaware of the fact that endometriosis has no cure at present, especially when talking to others about this disease. It’s the cloud that’s been hanging over my head since my diagnosis three years ago, and I’d made peace with it eventually because even though it was incurable, at least it wasn’t terminal. And realistically, after a few operations, I figured I’d be rid of the worst of the pain, surely. I reckon that was a definite 50/50 denial and naivety, not helped by the lack of understanding and information out there about this disease.

I’m now 6 weeks shy of being 2 years post-op. I want so badly to say that my life has changed for the better and I’m a brand new, shiny person. I want even more so to say that pain is nothing but a mere memory of the struggles I’d faced. Neither of those are true, and it really fucking sucks. I can wholeheartedly admit that I took last year for granted; it was one of the best years of my life because I managed to live it to the full without being controlled by severe pain. It was a whole year of being pain-free. I was able to keep working without any big hitches, I went on my first solo holiday abroad, I had the best summer of my life too. Even though it didn’t last as long as I wanted it to, I’m bloody proud of what I achieved last year and the sheer fact that I thrived in any case. I achieved a win with last year, and I’m holding onto it.

Towards the end of the year, I found myself back in A&E again after experiencing pelvic pain so severe, I couldn’t cope with it at home on the opioids I’m given to manage pain flare-ups. A few weeks later, I found myself in the same position again, and thus, an unpredictable pattern was forming. The pain has been getting worse, more frequent, and it’s spreading to other parts of my body again. For a few weeks, I believe I was in denial that I could be back to square one again. I’ve found that, with endometriosis, you’re part of a vicious cycle –

As part of the vicious cycle, I forgot how bad the pain can really get, especially with the incredible year I’d had last year. I honestly forgot what this disease is capable of, and the damage it can cause not only physically but mentally, too. Someone at my workplace recently asked me to describe the pain and it took me some time to figure out how to really answer that – on a good day, the background pain feels similar to period pain, with cramps and aches which cause discomfort but is low in its severity. On a bad day, it’ll feel like an elastic band is being tightened around my pelvis, and my ovaries are being squeezed until they’re about to burst, along with the rest of the organs which are affected by the pain. On a really bad day, the pain is nothing short of what I imagine it would be like to have the contents of my pelvis scraped out repeatedly, with a serrated knife. The sharp, stabbing and persistent pain is why 9 times out of 10, I have to go to hospital because, (and take note of this, NHS), painkillers at home, even my friendly opiates, will not touch the sides of this pain. So when the triage nurses ask me to rate my pain, I tell them its 10/10 because at that moment, it feels like my body is shutting down and I feel like I’m dying. And in those moments, I have truly wished I was dead. Every single time.

After a while, you get used to being in pain. I’m in pain every day. Some days are better than others, some days I feel half tempted to book myself in for a radical hysterectomy. There’s very rarely any in-between. But, you learn to live with it because you have no choice. The alternative is allowing it to consume you, and there really is no surviving that. The hardest part of this disease is the way people react to it – and I’m calling out all the healthcare professionals who I’ve dealt with here (excluding my private endometriosis surgeon who saved my life). Whilst I’m aware of the privilege of our NHS, I’ve experienced the worst side of it and I can’t keep quiet about it just because of the nationwide crisis at the hands of our corrupt and useless government. There’s also a global crisis within women’s health which people are not taking seriously enough, and haven’t done so for centuries. My gallbladder was removed unnecessarily because I was diagnosed wrong. I had needles of anaesthetic pumped into my spine because I was diagnosed wrong. I was forced to undergo needless, invasive procedures because doctors thought I had gastroenteritis. One doctor told me it was ‘phantom pain’ which didn’t exist, and was all in my head even though it ‘felt very real’, and suggested I see a therapist about it. Maybe the reason for such a fundamental flaw in our healthcare system is because the last time NICE guidelines in how to treat endometriosis was updated was in 2017. This disease has to be taken more seriously, and change can only start from the top otherwise the results are what I’ve experienced first-hand in hospital consistently since I was 16. Negligence, trauma which now requires me to seek therapy to process and not to mention further worsening of an already painful and incurable condition. The fact that I’ve rated my pain as 10/10 to triage nurses in A&E over the last few years, only for them to categorise me as ‘non-urgent’ on the paperwork makes me sick to my stomach. Whilst I can appreciate that a potential cardiac arrest is more life-threatening than endometriosis, the standard of care must be kept the same across all illnesses. My condition is incurable which is bad enough, but being treated like the pain is just period pain cramping takes a toll on my mental health that I’ll never fully recover from. Women should not be made to tolerate this just because we have a uterus, because I can bet all my money that if men experienced this disease, a cure would have been found yesterday. We shouldn’t be at the point where we go to hospital only to be made to beg for painkillers. Nor should we be at the point of hysterically crying and writhing around, doubled over on a chair in the waiting room to reach the threshold of being in enough pain in a doctor’s eye to receive painkillers. And needing pain relief from hospital doesn’t make us substance abusers. Unfortunately, we really have NO other choice, and there’s so many things I’d rather be doing than crying at the knees of an unrelenting doctor to give me something, anything, to take the pain away.

I don’t know why women are expected to go through this and just deal with it without any support or understanding from those who are supposed to be there, and trained, to take care of us. I don’t know why it takes on average 8 YEARS for a woman to be diagnosed with the disease. I think that’s fucking ridiculous. It scares me to think of how many young women are out there, that are being sent home by doctors without any follow-up, scans or further investigations in place when they could have endometriosis. It’s a paralysing concept, and the severity of the situation cannot be understated. Whilst I am so proud and thrilled to see that more people are taking it upon themselves to learn more about this disease and understand our plight in greater depth, this same attitude must come from the top of the NHS food chain, and then filtered right down to every single healthcare employee, from doctors to nurses to surgeons to sonographers. Take this pain more seriously because even though it might not be a case of life and death for us, it definitely feels like it.

I’ve been failed more times than I can count by those who were supposed to treat me. I’ve been let down badly, and I refuse to believe that systemic racism and sexism did not play a big part in this. But in the midst of all of that, I stumbled across a surgeon who saved me and for that I will be eternally grateful. So on this Endometriosis Awareness Month, I am on my knees begging for someone to pump more funding into the research of endometriosis so our only treatment options don’t just consist of hormone therapy and surgery, and also into the training of doctors and nurses in how to TREAT sufferers of endometriosis when they come through their doors in pain that no one will ever be able to understand. The healthcare system needs to do better when it comes to endometriosis, and that can only start from the top.

And I won’t stop screaming until I’m heard.

A x

Anisah vs Endometriosis: Round 1 – Diagnosis

Endometriosis

Making the decision to talk and write about my battle with endometriosis was a big one, made from my hospital bed post-surgery two weeks ago, when I realised I wouldn’t be able to sleep at night if I didn’t use this incredible platform I worked so hard to build to share my experience. In doing so, I hope to spread awareness of how catastrophic this disease is, the extent of its debilitating symptoms and ultimately how hard I had to fight to get to where I am now. With chronic pain and this incurable condition comes intense trauma which I’ll probably spend the rest of my 20s and 30s processing, but it’s something I believe I’m ready to push through for the sake of other women out there. This post is for the young teenagers who don’t understand why their period pains are so bad but are made to believe it’s normal; for the young women who are forced to choose between having children and having surgery to alleviate agonising pain; for the partners, husbands, fathers and friends who can’t understand what it’s like to live with this disease, and for the women who don’t think anyone is listening.

In September 2019 I found myself in a hospital bed in Mauritius where I was celebrating my graduation from university, with a doctor standing in front of me telling me a cyst on my ovary had burst and there was fluid in a uterine cavity in my pelvis. They wanted to operate on me there and then, but I was due to fly home the following day so opted to be treated in the UK. I was immediately referred to a gynaecology department in my local hospital where I’d spend the following 4 months undergoing various scans and tests to understand why I was experiencing ruptured-ovarian-cyst pain when there was no ovarian cyst anymore. During those four months, I’d also frequently find myself in a&e begging for someone to help with the pain because it was truly unbearable. I can only describe it as a continuous stabbing pain in my lower abdomen/pelvis, sometimes manifesting as though someone was physically squeezing my ovaries with their bare hands.

In January 2020, I was referred to my second gynaecology consultant after my first consultant failed to understand why I was in so much pain that it incapacitated me. He suggested I “could” have endometriosis – the only way to diagnose suspected endometriosis is to undergo a diagnostic laparoscopy. Superficial endometriosis does not show up on any ultrasound, whether it be external or trans-vaginal (internal), and so therefore “going in” was the only way they’d know for sure what was going on inside my womb and pelvis. We were approaching the height of the pandemic by this point so my surgery was understandably postponed twice, but after pleading with the doctors to push it forward due to progressively worsening pain and its severity, I eventually underwent keyhole surgery in May 2020 to explore the inside of my pelvis and find the cause of this devastating pain. It’s most ironic that my surgeons and consultants didn’t expect to find anything – the scans were clear, my blood work was completely normal. However, the laparoscopy showed extensive endometriosis tissue which had spread across my pelvis. It had reached and spread across my ovaries, the outside of my uterus, the inside of my uterus and the back of my uterus. I woke up from the operation only to be told with considerable surprise and a hint of disbelief that my endometriosis was aggressive. I was informed that the surgical team used an operating technique called “ablation” to remove these deposits of endometrial tissue but “they’d got it all“. Ablation involves burning the endometriosis deposits, as opposed to cutting it right out which is a technique called “excision”. My surgeon subsequently placed a Mirena coil in my uterus post-surgery to lessen my period pains going forward and reduce heavy bleeding. The hope was that I would eventually stop getting periods which would eventually lessen any future flare-ups caused by my endometriosis, as this is a chronic condition and so ultimately would grow back at some point.

The surgery appeared to be a success initially. It took three weeks of recovery but I was soon back on my feet afterwards and felt significantly less pain than before my operation. I was back to working out 6 weeks after the operation, and by 8 weeks post-op, my energy levels were almost back to normal. On some days, I experienced no pain at all! I came off the strong painkillers within a couple of months – it was truly miraculous and I honestly thought I’d seen the end of my fight with pelvic pain. However, come September 2020 the symptoms came back with an almighty vengeance. Once again, I’d frequently find myself in a&e being given two doses of morphine to control the pain and even that wasn’t enough. The flare-ups would get worse around my period – the first three days were agonising and at times I’d be vomiting because the pain was so intense, or doubled over in a foetal position. I’d be taking tramadol or codeine to control the pain when I was in the throes of a flare-up. And the worst part of it is that I felt like I needed to go on as normal – I’d had the surgery less than four months ago, surely my endometriosis couldn’t have grown back already? Maybe this was just post-op pain? Could it be that I was simply overly-sensitive to pain now? I was referred back to my consultant who was as confused as I was.

Over the course of the following five months, I’d have various pills thrown at me in a desperate attempt to calm me down, to no avail. In November 2020, my parents and I decided to get a second opinion – I underwent a private trans-vaginal ultrasound at an ultrasound centre in London where it was discovered that I had a 5mm endometriosis lesion in my uterus; my endometriosis had grown back in less than 7 months. To this day, I am filled with such gratitude that the woman who performed my ultrasound was a specialist in the field of endometriosis, and thus with trained eyes was able to pick up this small deposit of endometriosis that no one else on the NHS could see. Had my parents not pushed for a private scan, I’d have been none the wiser to what was happening inside my body and potentially wouldn’t have fought as hard as I did to get some answers.

After the private scan, I went back to the NHS with my new ultrasound report in hand – the NHS dismissed my report instantly. After conducting their own ultrasounds to prove a point, they couldn’t see any endometriosis at all despite my excruciating pain and multiple trips to the emergency room for morphine and codeine to control my symptoms. One ultrasound sonographer even claimed this 5mm endometriosis lesion was “simply hormonal“. I was put on three different contraceptive pills anyway, all of which failed to make an impact on my worsening symptoms. I was given a hormone suppressing injection which almost obliterated my will to live and physically wrecked my body. I was then given more contraceptive pill options. It was only in March 2021 that we realised something I wish I’d figured out seven months prior – my endometriosis doesn’t respond to hormonal treatment and I don’t respond well to hormonal treatment either. I’ve come to learn that this is common in endometriosis sufferers – some forms of the condition can be well-managed by the contraceptive pill alone as endometriosis is estrogen reliant, but some forms of the disease such as mine require a more aggressive approach. By March this year, my quality of life had deteriorated extensively. I was in pain every single day of the month; I knew nothing else but agonising cramps which would paralyse me; the constant feeling like my ovaries were being either stabbed or physically ripped out of my body. The onset of pain would be so unpredictable that I’d wake up with baseline, bearable pain but suddenly I’d be at work, doubled over and gasping for breath because my cramps would intensify – going home isn’t even remotely a viable option either during the throes of endometriosis pain, so I’d just have to suffer through it with a forced smile on my face. The symptoms were also evolving rapidly – I was starting to experience crushing chest pains, burning shoulder pain on my right side, pelvic pain radiating down both of my legs resulting in me losing feeling in them on the odd occasion, stabbing pain when I went to the toilet (I’d have to literally push myself off the toilet seat whilst screaming because the pain was too much to bear when sitting down) and a stabbing pain in my upper right abdomen, just underneath my ribcage. No one could make sense of my escalating symptoms and despite undergoing countless, extremely invasive scans and tests, everything came back clear to them. The NHS eventually stopped believing my pain, and what’s worse is that they stopped taking my concerns seriously. They’d given up on me, instead suggesting my priority as a 25 year old should be focussing on my fertility as opposed to having another operation which could jeopardise my chances of falling pregnant – this is categorically incorrect and an example of the outrageous standard of care I was given on the NHS. Fertility will not be affected by endometriosis surgery if performed by the right surgeon who knows what they’re doing!

In March 2020, after refusing to try a second dose of the Zoladex injection, I requested to speak to the consultant overseeing my treatment and care. He was my fourth consultant since September 2019, and supposedly a specialist in the field of endometriosis so I hoped he’d thought of more options in terms of my treatment plan. As expected however, that phone call was nothing short of traumatic; the consultant continuously defended his choice of treatments despite the evident deterioration of my mental health as an inevitable consequence of various hormonal treatments. He was incredibly condescending and refused to take ownership of the state I was in. He took no responsibility for his failings as a doctor and a gynaecological specialist. In fact, at one point he stated, “at least we know you won’t able able to cope with the menopause in the future” after I detailed my traumatic experience of taking the Zoladex injection. I felt let down, hopeless and devastated after that telephone consultation. I was close to giving up and almost resigned myself to a lifetime of ovarian and womb pain that would dominate my entire identity. I can’t put into words how emotionally exhausted I was at that point; I honestly thought there was no end in sight and this agony would be the end of me.

My parents and I decided that my condition was too severe to continue on the NHS path – I wouldn’t survive it. I decided to investigate some endometriosis specialists in London who had a greater knowledge of the disease than the NHS doctors I’d been condemned to. I was desperate to talk to someone who understood the science behind endometriosis and who could offer me an alternative to taking two forms of contraception at the same time. I just so happened to stumble across a specialist based in Central London who was apparently the “best in the field” (I won’t mention his name out of respect for his privacy, but Google introduced us!) In fact, every review of him exceeded outstanding and so I took the plunge and messaged him. Three weeks later, I was sitting in his office smiling on the verge of tears underneath my face mask with incomprehensible gratitude – I’d found someone who took me seriously and offered me a coherent explanation for every single one of my symptoms and why I was still suffering. He discussed the science behind the different types of pain I experienced, then offered me clear solutions with sincere confidence and ease; it was at that point that I knew I’d come to the right person. I’ll discuss in greater detail the treatment I underwent under his care in another post because it needs to be shared but I also needed to draw attention to it now. Because I didn’t think anyone would listen to me again after the experience I had with the NHS – for months, all of my symptoms were belittled and my concerns dismissed. I felt like my endometriosis would control my way of life for the rest of my years and I lost all hope in ever being pain-free again. I felt small in the face of the NHS consultants and doctors; not once did I see or feel an ounce of compassion, empathy or a willingness to understand my plight. They threw medication at me without even contemplating whether or not those drugs would be in my best interests, what with my reaction to hormone therapy in the past. I’m 25 years old, and I’ve spent the last nine years of my life in and out of hospital, in pain I can’t even put into words to describe anymore. I lost the very essence of who I was and instead I became a young woman filled with resentment and anger towards the world around me. The smallest things would irritate me, and the most mundane things would set off anxiety attacks in public. I was constantly at war with myself and this affected every single aspect of my life. Being in that much pain for such a long period of time was also incredibly isolating; I felt desperately alone in my suffering and despite surrounding myself with the most incredible circle of friends, I ended up hiding it all from them because I knew they wouldn’t understand what I was going through. So, to have found someone who instantly listened to me, took my symptoms on board and acted on them immediately makes me the luckiest girl in the world.

The one lesson I can take away from my battle with endometriosis is please listen to your body and act on your concerns. You know your body better than anyone else on this planet – if something doesn’t feel right, follow your instincts. It’s so much better to know and it be nothing, than to ignore it and the consequences be devastating. Had I stayed with the NHS this year and not fought for my health, my endometriosis would have destroyed four organs in my pelvis and caused irreversible, life-changing damage. All because my doctors couldn’t be bothered to investigate my pain further and take this condition seriously. Women across the world elect for hysterectomies because their endometriosis is too severe for them to cope, and treatment either isn’t working or isn’t being made available/accessible to them. This disease at times destroyed me, but it’s now given me a purpose in life – to ensure no other woman has to go through what I did and feel the hopeless despair at being refused certain treatment.

I cannot emphasise this enough – my scans came back completely normal but when my surgeons opened me up, they found diseased tissue spread across my womb. My excruciating pain was my body’s way of crying out for help, and I’ll be forever indebted to my current surgeon and the team of private specialists who listened to it without any hesitation and offered to help in any and every way they could. The NHS needs to do better when it comes to women’s health. Don’t dismiss a young woman’s pain – endometriosis pain needs to be taken more seriously. I’ve had my gallbladder removed and even that was nowhere near as painful as this. Train your consultants and specialists to treat patients with compassion and empathy – this disease is traumatising as it is, but being made to feel small and belittled by the people who are supposed to help you is a horrifying feeling. I was made to feel embarrassed and ashamed for begging for help from the consultants who continued to fail me. During every consultation, I’d break down in tears at least once, only to find the doctors staring at me with significant discomfort and unease – I was never comforted and I’m struggling to find the words to describe how helpless and devastated I’d feel during these consultations. I deserved to be taken seriously but my doctors robbed me of that right the second they implicitly categorised me as a girl who experienced cramps and some pain. I’m still of the opinion that because my pain didn’t manifest as something physical that my doctors could visibly see and treat, they struggled to believe it was real. I’ll have a hard time forgiving them for what they put me through.

A x

HEALTH UPDATE: MAY 2016

Life Updates

The waiting game.

It appears I spend most of my time waiting for things to happen; currently, I’m waiting to be seen by a specialist in the field of Sphincter of Oddi Dysfunction at Harley Street. Sadly, the NHS route proved to be an absolute disaster; I spent two months waiting for the appointment to come through to see a consultant who had an “interest” in the field of SOD at a tertiary centre hospital, only for him to tell me there was nothing he could do about my condition due to a substantial “lack of evidence” excluding my pain. It’s safe to say that I was livid after that appointment. His reluctance to do anything about my condition pretty much summed up why I have no faith in doctors – for over a year and a half, my condition has worsened yet they seem to intentionally brush over my three year-long suffering.

Sphincter of Oddi Dysfunction is a tricky little condition; for one, the Sphincter muscle in my bile duct is so tiny that the best way to assess whether it’s working properly (or not, in my case) is to go inside and undergo a procedure. The problem is this procedure carries the risk of inducing pancreatitis; having already suffered a bout of it two years ago, I’m not too keen to risk any chances of having it again because the pain is horrendous. Pancreatitis also runs the risk of inflicting life-long damage onto the pancreas, creating furthermore health problems. However, having exhausted many medicinal routes to tackle to pain I’m in daily with SOD, I’m running out of patience and options. Being bombarded with pain relief doesn’t solve the issue and it appears the doctors I’ve seen are almost reluctant to cure it, opting for a safer, non-invasive method of treating the symptoms.

Another problem is the relapses. Whilst I was away, I suffered from an episode of severe pain which landed me in hospital – not ideal when you’re in another country. The relapses occur almost every other month, drastically impacting my life with its unpredictability. Doctors perhaps perceive my desperation for medical intervention as just another kid who comes in with pain in their stomach. They don’t realise how badly this condition has ruined my life for the past three years. They can’t imagine being in pain for a solid 18 months because they’ve never been there.

I know it’s wrong to desperately hope for something when I’ve already been disappointed so many times before, but I sincerely hope this consultant will give me some answers this time. If not surgical intervention then at least another option to consider would be preferable. Being written off has destroyed me, physically and emotionally.

So, hopefully, in ten days I may just get some answers!

A x

 

Eating Disorder Awareness Week 2016

Life Updates, Mental Health Activism & Awareness

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

My Battle With Anxiety: 2 Years On

Mental Health Activism & Awareness

Anxiety is a general term for several disorders that cause nervousness, fear, apprehension, and worrying… These disorders affect how we feel and behave, and they can manifest real physical symptoms. Mild anxiety is vague and unsettling, while severe anxiety can be extremely debilitating, having a serious impact on daily life.¹

Sounds about right. I still remember the first time I heard the word, instantly associating it with weakness and fragility. A flaw. There are many misconceptions associated with the term ‘anxiety’ and understandably so, considering the word is so broad and broadly used in society. I also believe it’s used too loosely in day to day life, contributing to a lack of understanding. Despite coming so far as a race, we’ve become stuck in a place where we cannot manifest the ability to treat people equally based on their mental state, which is undeniably a shocking position for us, as humans.

The first time I told someone outside of my family about suffering from anxiety, I was terrified and lost in a world where toxic thoughts were swimming around in my head and I genuinely believed they would save me from drowning. Initially, telling someone else about this was an instant relief. I felt a little lighter knowing I’d shared something so destructive in my life with someone else who’d perhaps be able to help me through it, providing support where possible. Sadly, I was wrong. I’ve since learnt that people will certainly provide a supportive front but that’s all it is – a facade. Some of us are designed to deal with heavy emotional distress and some of us simply are not: and that’s okay.

Coming to terms with anxiety meant having to re-evaluate my relationships and friendships; it meant taking a step back and assessing what/where the foundation of my anxiety attacks were. I soon came to realise that a significant amount of stress I put myself under was based on being treated a certain way by people I believed I was close to. Without going into too much detail, I wasn’t treated very well by the people I held dearest to me, and I deserved much better. Unfortunately, I just couldn’t see it at the time, so it was a vicious cycle of feeling second best, then apologising for feeling this way only to be treated poorly a few weeks later. I believed that was okay, too, which is the saddest thing. My anxiety attacks were set off by feeling like I wasn’t good enough, which escalated until I reached breaking point. This was a continuous pattern throughout most of 2014 and early 2015.

I only really noticed an improvement in my mental health when I surrounded myself with positive influences and strong, healthy friendships. People who loved me unconditionally, who picked me up when I was down and never treated me differently based on my anxiety disorder. Cutting toxic relationships out of my life has massively transformed it. I’ve also found that keeping myself busy has helped immensely; the panic attacks come less often now, and I have less time to overanalyse every aspect of my life. It could be inferred that overanalysing has its perks (kind of) – I am an perfectionist and if something isn’t done to my standards, I’ll continue to work at it until I’m happy. As long as my mind is preoccupied, my anxiety levels remain steady.

Naturally, there are those days where I feel incredibly low and for no apparent reason. This is what I feel is imperative to underline and draw attention to; we have anxiety attacks, panic attacks and feel low for sometimes no reason at all. It just happens and there’s nothing we can do about it; no matter how much someone offers to comfort me, I cannot escape the prison walls of my brain, with voices telling me a thousand negative things all at once. And occasionally, the only thing I can do is cry about it and move on from there. Everyone reacts differently to anxiety and it’s formidable attacks: from crying to remaining silent for long periods of time, sometimes it’s best to leave someone be if they cannot comprehend what’s going on in their head. The same applies to social anxiety – I can’t control the panic attacks every time I enter a room or a bus full of people. Regardless of whether you’re my friend, relative or a stranger, I will panic when entering a confined space containing a number of people. That’s just the way it is for me, and no amount of therapy has managed to change that. (yet)

But if I’ve learnt anything over these two years, it’s to embrace life and all it’s got to offer us. I spent disgustingly too long distressing myself over whether or not I was a good person, if I was good enough. Surrounding myself with good people was what helped me through my darkest hours. People who inspired me, motivated me. Finally, writing has been the most effective form of therapy for me. It’s not even the factor of others going through similar experiences, it’s just ten times easier to deal with when I’m not holding it inside, when it’s on paper. Getting over the physical health stuff was tough enough, but coping with the trauma of a mental health disorder is something else entirely.

My anxiety hasn’t gone away but it’s most definitely become easier to live with. The good days almost always counterbalance the bad, and that’s what I’m focussing on.

A x

¹http://www.medicalnewstoday.com/info/anxiety/ 

 

Save Our NHS: Fight the Junior Contract

Current Affairs

I’m both saddened and appalled at the strikes going ahead over the next few weeks, but I support the junior doctors in their decision because I hope it serves as a wake up call to this blindly ignorant government.

Although this isn’t the first strike to take place over working hours, it’s shocking to see the government’s utter nonchalance at this whole situation, with Hunt instead referring to those striking as “trade union militants.” Junior doctors are striking against unjustifiable hours, and rightly so.

Three years ago, I held most junior doctors in utter contempt simply because of my experience in an NHS hospital which left me in an increasingly worrying state of health, both physically and mentally. The doctors I came across were completely unexperienced and out of their depth when they came to me, primarily because my body was rejecting all medication and they were at a loss as how to treat me. However, with 2015 being the year which saw my accident and emergency admissions at an all time high, I’ve come to realise that my experience three years ago was fundamentally due to the hospital and certainly isn’t an accurate representation of junior doctors over the country. They sacrifice everything for us and we tend to forget that a free health service is a luxury in many senses; free services, 24 hour emergency rooms, surgical intervention being free. Of course, there’s many downsides to the NHS which can be inferred as counteractive but the fact that these people are working day and night to help us is something we cannot and should not take for granted.

Hunt, along with the rest of this pathetically useless government, are dissuading the public from supporting the doctor’s strike by claiming harm will come to those with pre-booked appointments, particularly the elderly and cancer patients etc. Bullshit. The appointments have not been cancelled, they’ve been rebooked for a later date. If the patients were in such grave danger, surely they’d be admitted into hospital and be under the care of surgeons, registrars and senior consultants? Outpatient appointments have been affected but this is not the end of the world. It’s really not that big of deal compared to what these doctors endure daily. If we had even an inkling of what their schedules must be like, we’d hardly be kicking up a fuss and Hunt’s position would most definitely change. It’s very easy to criticise a strike when you won’t be remotely affected by the consequences of your own actions.

Hunt also claims that the lives of the public will be put in danger, but he’s failing to register, or possibly ignoring, the fact that lives will be in danger with overtired doctors. They’re more likely to make a mistake if they’re unsafely overworked. This kind of gross ignorance sums up the government. Surgeons, nurses, doctors, they’re all working incomprehensible hours out of their own goodwill, and a disregard for this is inhumane.

If anyone is to be blamed over this walkout, it’s David Cameron and his NHS cuts. The only people “damaging” patients’ health is this government.

I support the junior doctors, and their decision to oppose a cut in pay as well as overworking to the point of disregard for their own health.

#SaveOurNHS

#JuniorDoctorStrike

Panorama: 26th October 2015 – Britain’s Mental Health Crisis

Mental Health Activism & Awareness

After watching Panorama’s recent documentary tonight, I’m appalled at the state of mental health care. Of course, this is not the first reminder of the terrible state the government cuts have reduced the trusts to, but it’s an imperative reminder to all of us that we need to raise awareness for those vulnerable citizens silenced by their psychological disorders.

Firstly, the assessment of those “less ill” to free more beds for furthermore patients. Sickening. A patient who had the intention of committing suicide at a train station shouldn’t be “assessed” on whether or not they’re worthy of a bed: this is nonnegotiable. Vulnerable citizens are silenced due to their psychological conditions which is the most shameful fact of all. I’ve said this before and I’ll say it again: a cancer patient or a terminally ill patient ill not be refused a bed, neither will they be “assessed” on how unwell they are. They’d be given a bed as soon as possible, with the professionals working as hard as they can to get them on the road to recovery, or at least to make sure they’re not suffering as much. Why aren’t mental health patients treated with the same urgency?

How can patients, who are assessed to be suffering from their health conditions to a great extent, but not as great as other patients, say suicidal, be cast out into the community with no social help or support system to rely on if they relapse? Where’s the security that they’ll be helped if they ever feel vulnerable or have a bad day? This isn’t just a disgrace, it’s an atrocity and complete disregard for mental health sufferers.

Fundamentally, patients are judged on their suffering. As someone who’s been rushed to a&e 11 times over the past two years with multiple health conditions, I know that patients are assessed on how much pain they’re in. The more pain you’re in, the quicker you are treated. As a sufferer of anxiety which almost crippled me to not leaving my house for weeks on end, my parents and I felt I had no choice but to receive private help as my condition was too serious to be thrown onto a waiting list, which could take up to six months. This is where the problem lies, and where it will continue to lie until the stigma attached to mental health has dissolved. Most people cannot afford private healthcare, let alone private mental healthcare. How can the government expect a patient to pay £1000 a day to receive help and support which needs to be offered free, and is easily accessible?

I urge as many of you as possible to sign the petition below, which, if 100,000 signatures are received, the parliament will be obliged to take action and debate the bed crisis.

https://petition.parliament.uk/petitions/109889

This is an increasingly concerning situation and we are all ambassadors for those in need of our support and help. Together we can make a difference, and we will.

A x

World Mental Health Day 2015

Mental Health Activism & Awareness

A couple of days ago marked World Mental Health Day, a day of showing awareness and support for those suffering from mental health conditions. As an anxiety sufferer, I believe mental health is grossly belittled and not enough is done to support those who have to live with harrowing mental health conditions.

It took me nearly two years to fully understand what I suffered from. Having both general and social anxiety is a pain in the bum; it affects literally every part of your life. From getting on public transport to walking into a doctor’s waiting room, and even walking into a room full of family and friends, it’s a dreadful thing to live with. And that’s just the social aspect! When my therapist told me the feelings I was suffocated with on a daily basis were related to anxiety, I was confused, scared and ashamed. I didn’t tell anyone for months, not even my parents or family. In my head, anxiety was a weakness and I was simply a weak person who couldn’t control her emotions.

The first person I told was, at the time, my best friend. He helped me through the worst periods of anxiety and rescued me when I felt like I was drowning in my thoughts. Having someone there by my side whilst my brain exploded into a million thoughts was a blessing. In fact, without him, I would not be sitting here today; he saved me from myself. Anxiety in a nutshell is overthinking every little part of your life until, to use the cliche phrase, a molehill becomes a mountain. You end up worrying over everything, thinking you’ve done something wrong or there’s something wrong with you; you feel like no one will understand what you’re thinking and in most cases, sadly you’re right. Not many will understand you. But it’s finding the support systems and networks out there to help those who feel completely isolated by their conditions which is so imperative. The fact that many people feel the need to see professionals privately is absolutely absurd and a complete failure of the government in supporting their vulnerable citizens. The idea of someone, or someone’s parents, paying £70 for a professional to help one through an ordeal as traumatising as their own psychological disorder is shameful. No one deserves to be given the ultimatum of private professional help or being dismissed onto a waiting list.

I’ll ask you a question: if a cancer patient, or a terminally ill patient was told they needed to wait to seek treatment for their condition, is that considered acceptable? No. There would be a public outcry at the injustice of forcing an unwell patient to wait. So, what makes mental health any different from physical health? We may not be hurting physically, but we are hurting mentally. Cries of pain can come from within, unnoticed by others. Mental health is JUST as important and life-threatening as physical health. I suffer from both myself and can confirm that my physical suffering, which has been rather intense and at times, unbearable over the past three years, was just as painful as my mental suffering. So throwing someone under the carpet with the insincere promise of a “waiting list” is pathetic.

More needs to be done to support mental health sufferers. More needs to be done to help sufferers come to terms with what they have, so they can move forward and control it.

Right now, it’s explicitly clear that the government has failed us. Now’s the time to make a difference, with or without Cameron’s help.

Dissipate

Mental Health Activism & Awareness

They’ll ask me: “what’s wrong?”

with the expectation of hearing “I’m fine”
to which they accept
and move on.
And so do I.
Inside, I’m far from fine;
I cry at everything
not knowing why.
I sleep a maximum of four hours a night.
“I’m fine.”
The offers for help are vacant.
“It’ll be okay” soon becomes
“maybe you’re overthinking things a little?”
You can help me with my maths homework
but you’ll never help me solve
the puzzles in my head.
One plus one doesn’t always equal two
up here.
You can’t help me get rid of the monsters under my bed.
“I’m here if you ever need a shoulder to cry on”-
fucking liar.
That offer is far too soon retracted.
I’m here for you if your boyfriend dumps you
but that’s all I can offer you.
My problems are not as shallow as that.
The depth of my problems compete with the ocean;
what will drown me first?
I guess I’ve learnt over the years
there’s only one hand that will reach down for you
into the abyss,
whilst you’re drowning and gasping for air.
Trying to gasp hold of the last fragments of sanity
as they dissipate between your fingertips.
That hand, my friend
is yours.

“Assisted Dying”, or “Assisted Killing?”

Current Affairs

I’m incredibly disappointed to learn that 330 MPs rejected the idea of allowing a terminally ill patient to end their lives with medical supervision, despite many doctors agreeing to administer the drugs and take part in it.

I understand the cons of the bill; the possibility of vulnerable patients being exploited by their families and pushed to end their lives. That patients may feel the need to end their own life to stop the misery and pain of their loved ones. I get that. However, I am of the opinion that those 330 MPs acted with complete selfishness and possible religious bias.

I am not terminally ill, so I cannot speak for those who are. I also strongly oppose the categorisation of people who qualify for the ‘right to die’ – those who only have 6 months to live. What about everyone else? What about those who have been suffering from constant pain for months and even years on end? What about those with absolutely no quality of life? According to the Guardian, “one in five people who travel to Switzerland for assisted-dying are from the United Kingdom.” Surely the statistics speak for themselves?

I’ve watched and read a fair few interviews with people who suffer from motor neurone disease and their biggest fears were living a life of complete paralysis, wheelchair bound and in pain without the ability to speak coherently and express their distress. For MPs to deny these people that right to me, is a complete failure of morality within the establishment of law-making.

Another obstacle in this debate is the concept of religion. In many religions such as my own, it is forbidden to take one’s own life. Full stop. There are no ifs, no buts; just no. I understand that life is precious and a gift; we only get one and we ought to do all we can to preserve it. But I will never understand the point in living if there’s nothing to live for because an illness or health condition is prohibiting you from doing so, and instead you’re sentenced to a life of pain and misery.

I sincerely hope this isn’t the end of the debate on assisted dying. We ought to give these people a chance to do as they please with their own lives, as they’re the ones living it. Not us. For authoritative figures to simply dismiss this chance in the name of “ethics” is simply incomprehensible and morally unacceptable.