This week’s Medical Mondays post has been written by my fellow book-loving & chronically ill blogger, Betsy. Betsy first approached me when I asked my Twitter pals if any of them had had a hard time with medical professionals & would be up for guest-posting for this series; when I heard some of what Betsy had been through I knew hers was the kind of story I wanted to be told through Medical Mondays. Betsy has struggled with anxiety, depression, OCD & anorexia nervosa for many years now & her experiences with the NHS are even worse than my own; what’s written below isn’t an easy read, but it is important. This is Betsy’s story…
Hello everyone, I’m Betsy from the blog bookishbetsy.wordpress.com and the lovely Lucy-May very kindly asked me to write a guest post on her blog as part of her Medical Mondays series. Lucy-May and I have a fair bit in common as we’re both chronically ill book lovers who share a passion for raising awareness of our respective conditions.
I have chronic anxiety and depression and have previously suffered from OCD and anorexia nervosa. I first sought professional help at the age of 11 in early 2008, but I’ve suffered for almost as long as I can remember. My parents recount stories of my ritualistic behaviour, like checking my possessions before leaving the house, as part of a getting ready routine I called my ‘possibilities,’ from when I was a mere toddler. Something they initially thought to be a harmless quirk turned out to be a coping mechanism for my inward anxiety, we later came to call it OCD.
My OCD flared up particularly badly when I was mercilessly bullied in primary school; I’d turn up to school covered in bandages from where I’d washed my hands red raw. I got a little better after starting secondary school but unfortunately my as-yet undiagnosed condition flared up again when I lost two family members to suicide in 2007 and 2008, which lead to us seeking professional help and my first official diagnosis with OCD. I had sessions of therapy to combat my ritualistic thinking and reduce my compulsions to engage in obsessive behaviour like handwashing that was having a harmful effect on both my physical and emotional wellbeing. Unfortunately, for whatever reason, I was unable to work through what was going on for me in its entirety, if such a thing is even possible. For many people, myself included, the few sessions of therapy the NHS routinely offers are simply not enough. Perhaps the professional intervention I sought was too little too late? I’m not sure but I know I kept a lot of pain held inward for a very long time.
In 2009, whilst waiting for another bout of therapy, I developed severe anorexia nervosa, for which I was hospitalised for three months. This is perhaps the most traumatic experience of my entire life. My physical condition was so severe that I was admitted to a children’s ward in a general hospital, where psychological intervention was unavailable. They claimed to only be able to deal with the physical side of my condition, that is, my extremely low body weight. Their flawed plan was to get me up to a weight that was no longer life-threatening but still underweight, then pass me on to mental health services to, as they put it, “work things out.”
I lived in an area with no specialist inpatient or day patient units for eating disorder sufferers, which unfortunately continues to be the case for many people in the UK even today, due in part to vicious cuts to the NHS and a sheer postcode lottery in terms of provision. Unfortunately, I suspect this is also the case for many other conditions. I got to a point where I was almost critically ill as the stretched community outpatient services, which consisted simply of weighing me and urging me to eat, found my case too difficult to treat with their limited resources. In addition, many people with eating disorders are initially dismissed by their GP and told things like “many teenage girls go on diets” as my mum and I were told when we first sought help. Furthermore, because specialist services are so stretched, many people do not receive diagnoses or professional help until they are severely ill and therefore less able to engage in the recovery process anyway. It is a vicious circle that needs to be addressed, for instance through the work of charities like beat.
My dismal experience in hospital was made even worse by the fact that the medical staff didn’t know what they were dealing with, one nurse even told me that: “I’d always be like this” (i.e. anorexic) and end up being “in and out of hospital” for the rest of my life, which was extremely unhelpful to say the least. Those were dark days and at such a low weight I was unable to engage in much, not to mention my recovery, as my cognitive processes were severely impaired. Instead I engaged in self-sabotaging acts like attempting to remove my feeding tube. I’m not proud of this chapter of my life but without psychological support, what was I to do? I do not want anyone to ever have to face a situation like the one I found myself in, especially at such a young age.
Eventually, I was referred to the Maudsley hospital in London and made frequent trips down to the capital from my native Yorkshire. Nobody should have to travel so far for treatment of any kind, nor should they and their families have to fight tooth and nail for specialist care, as my family and I did. I was ultimately able to recover from anorexia, though I have had a few wobbles in the years since then, notably during a period in which I was very unhappy both at university and in my personal life in 2016.
Throughout my struggles with OCD and anorexia, anxiety and depression were lurking in the background. I believe they were the real triggers behind these other conditions as I turned to more and more dangerous coping mechanisms in an attempt to deal with my underlying anxious nature and persistent sadness. Since I was a child, I have suffered from debilitating panic attacks that leave me hyperventilating and nauseous, often occurring at the most inopportune moments, like during school assemblies or just before exams. The harsh reality of my condition is difficult to bear at times, including my persistent insomnia, giving me nights peppered with nightmarish flashbacks and overwhelming fatigue during the day, which isn’t helped by the side effects of the various medications I have tried over the years.
Navigating the world as a chronically ill person is difficult enough, without even mentioning the huge stigma that still exists towards people with mental health conditions and the disabled community in general. This stigma not only comes from the media and the public but also the medical community, whose role should be to help us, not to judge or dismiss us. On my last visit to the GP, I was told to “just get a dog” and my symptoms would abate. Whilst I appreciate the many positive effects that caring for a pet can have on people with mental illnesses and other disabilities, this comment was extremely patronizing and inappropriate. There is no single reason why somebody may be feeling anxious or depressed, nor is there any one size fits all solution. Instead, the conditions are caused by a vast array of contributing factors, both hereditary and environmental, which we cannot fully pinpoint nor explain. And yes, talking therapies, medication and some lifestyle changes, such as getting a pet or quitting smoking, could help, but they are not a cure-all. Having been in the health system for over a decade, I know this to be the case, at least for me.
What the disabled community needs is more support, understanding and respect. We are people too and our experiences are valid. I can’t believe I still find myself having to say this in 2017! We should be believed when we tell you about our symptoms, not treated like some trifle of a problem that can be fixed by some wondrous method that hasn’t yet occurred to us, such as a miracle pill or fad diet. Some of us will recover and some of us are chronically ill, we need support either way. In being honest about our experiences, we are placing our trust in you. Many of us have had bad experiences before, be it with well-meaning supposed “friends,” the medical community or even our nearest and dearest so it takes a great deal of courage for us to be open about what is happening to us. All we ask is that you listen and be kind.