I suffer from Obsessive Compulsive Disorder, and have done for nearly six years.
Over the course of those six years, I have been lower than I have ever imagined being. I have had psychiatric treatment. I have seen psychologists and behavioural therapists. I have done my own, extensive, research on the illness that invaded my mind. I have been medicated to within an inch of my life. I’ve learned that OCD is considered the eighth most serious illness by the World Health Organisation, listed as more detrimental to lifestyle and life quality than illnesses such as cancer. I have been angry, afraid, resentful and then finally, accepting.
However, in March of this year, I realised the frequency and intensity of my thoughts had taken an upswing. There is no reason for this, just the general variation of the illness. I went through a period of denial, before finally acknowledging two weeks ago that I need some assistance.
Prior to this bout, I was not on medication or in psychotherapy. I still had OCD; it would not be an exaggeration to say it claims pretty much all of my thoughts, dictating everything from when I should eat to when I wash my hair. Yet it was that golden word in mental health treatment: manageable. Present, but controlled. So to admit that it had pushed out of those bounds of control was extremely difficult, but eventually, I knew I needed some outside help.
I telephoned my GP surgery. I have not been in treatment for over a year, and in that time we have switched surgeries and NHS districts. I knew I would need to start the process again, from GP to psychiatric referral. I also acknowledged this would require a certain amount of back-storytelling on my part, and was prepared for that.
My husband went to see one of the GPs at our new surgery. He explained my history with OCD, the steady worsening of the condition. The GP, to his credit, agreed to visit me at home to make the process as easy as possible for me. A date was set for Friday July 9th, and I breathed a sigh of relief because help was on its way.
I did, however, have certain expectations. As my husband had visited this doctor a full week before our due appointment, I expected the doctor to do his homework. I expected him to pull up my medical files – requiring only a few keystrokes in to a computer – and at least cast an eye over my previous diagnosis and its treatment. I do not believe this was an extreme expectation, considering the idea of a patient trying to explain their long and storied history of mental health problems in one 20-minute appointment is a ludicrous expectation. I therefore expected this doctor would go to the trouble of priming himself with the information available to him.
Friday afternoon rolled around, and the doctor arrived. He sat with a pad on his lap, and asked me “what the problem was”. Now, put yourself in my place. You now have to find a way to succinctly explain a six-year history with a problem you cannot effectively “show” a symptom for, in the space of two minutes. You therefore take short cuts, use terminology you expect him to understand or have an understanding of, because he is a medical professional and OCD is by no means a rare condition. Isn’t that what you do? Well, it’s what I did.
It quickly became apparent that not only had the doctor not looked in to my history, but he had no understanding of Obsessive Compulsive Disorder whatsoever – never mind my particular variant of this most multi-tasking of illnesses.
My official, psychiatric diagnosis is as follows: Obsessive Compulsive Disorder manifesting itself in Hypochondriacal Disorder. That diagnosis is rare, with hypochondriacal disorder not displaying any exact matches when entered in to the mighty Google. It’s a diagnosis my psychiatrists and psychotherapists worked hard to ascertain. Essentially: I have elements of so-called “normal” OCD, such as rituals and compulsions, but my primary issue is one of health. I believe I am ill, usually with cancer. These thoughts are all-absorbing and absolute. I carry out “compulsions” to try and ease these thoughts. I am terrified of being unwell, and internalise these thoughts (unlike the more well-known “hypochondriac”, who often uses their health as a way of getting attention and sympathy).
We’ll call it OCD/HD for short, and it is rare. That’s why many psychiatrists have treated me as something of a medical case for intrigue in the past.
I do not expect a general practitioner to be able to treat OCD/HD. It is such a complex illness that only a specialist in mental health has any hope of understanding and treating it effectively. However, like all NHS patients, a GP is the portal to the more specialist services, and this was my first port of call in seeking out treatment.
In reality, this GP did not even need to visit. He merely needed to consult my medical notes, and duly make a fresh referral. Like all cases of OCD – which is, by nature, chronic – I have never officially been discharged from the mental health services in my city, nor will I ever be. It’s a done deal for a GP; a quick referral and his job is done. I don’t need a doctor to treat me or even see me, as my medical history is substantial enough for a direct referral.
However, visit he did. After I bungled my way through a brief explanation, the doctor proceeded to try and “treat” me. His tool for this worthy endeavour?
“You should try not to think like that.”
Wow. If only I’d known six years ago, huh? If only someone had sat me down and said that then, I would have been able to – zap! Stop my OCD in its tracks. I would have gotten rid of those thoughts that dominant my every waking thought, and I’d’ve been A-OK. Christ, if only more people knew they just needed to try not to think like that, OCD wouldn’t exist at all!
Except… OCD does exist. It’s pretty serious. Did this GP, this qualified medical professional, really believe that every single OCD sufferer hadn’t given “not thinking like that” a go? Or was he simply throwing out a worthless, patronising and ill-educated statement about an illness he had yet to display any understanding of – apart from perhaps an awareness of what the acronym stood for? Well, I know which I believe.
Here’s a quick, current rundown of the ways I “try not to think about that”. One of my primary concerns is that I can feel lumps in my neck and throat when I move. I therefore wear my hair in pigtails, despite my age, because that way if I feel something against my neck, I can tell myself it’s just my hair. (OCD requires you to actively partake in a deception of your own mind). I am also concerned about an area of skin on my stomach – no exact cancer has been “diagnosed” by my OCD yet, but it’ll happen – so I’ve a towel wrapped over the area so I don’t come in to contact with it. Thirdly, my glasses are filthy dirty and almost impossible to see out of in poor light. Why? Well, if I see something funny in my vision, I can say it’s because my glasses are dirty, rather than the OCD’s version of events which are largely based around “brain tumour”.
That’s right now, in this second, three ways I am trying not to think like that. Three meagre ways of preventing thought processes I cannot control, in one snapshot of my existence.
The fact that I still think like that is testament to why I need treatment, why I am unwell and why I have been diagnosed with a severe case of Obsessive Compulsive Disorder / Hypocondriacal Disorder. Not being to help thinking like that is, well, kind of the point.
Unfortunately, I’ve heard this before. Worse yet, I’ve heard it from a psychiatrist – a mental health specialist! OCD is one of those illnesses that is tough to diagnose and even tougher to treat, and even psychiatric professionals can go their entire careers without meeting someone with the mix of OCD/HD that I have. However, some psychiatrists do understand, and it’s one of these that I need to see.
I did not need my doctor to try and teach me how to handle my OCD. It has been six years; I am largely aware of how I should handle my OCD. I know not to aggravate it, I know what to avoid, and I definitely know that the health section of BBCi is absolutely not for me to look at. Ever. I’ve learned to manage the illness through a mixture of good advice and learning the hard way.
Yet this doctor continued. He told me my thoughts were “childish”. He made a comparison with a child thinking there are monsters under their bed and needing reassurance.
Oops, I thought I was going to be able to let that one go without a dedicated paragraph, but I can’t. You see, one of the fundamental aspects of OCD is that the sufferer is aware that their thoughts are not normal. They know they are exaggerating, they are aware of their illness and how irrational they are being – but they can’t help it. This awareness is actually one of the worst parts of OCD; I have frequently thought “if only I was just going insane, I wouldn’t know about it and that’d be grand”.
So to tell me my thoughts are childish is nothing but downright fucking insulting. Does he think I want to be like this? That I’ve somehow chosen to think these “childish” thoughts? That even though I know how irrational I am being, I can’t stop it, and that’s why I want treatment? If he does, he’s an idiot. If he doesn’t, he’s just patronised and insulted me. Neither are good.
However, the worst was still to come. After his (I’m sure in his mind) comforting three sentences about how to deal with OCD, he talked about “further options”. Despite at this point feeling brow beaten and insulted, my ears pricked up. I’m used to uninformed GPs, but this was the bit where I’d get to see a psychiatrist, so I paid attention. “The thing is, psychiatrists are funny people, and I’m not sure they’d be interested.”
A psychiatrist not being interested in someone with a mental health problem? Is that not… I don’t know… in complete defiance of their entire professional existence? And besides, what’s interest got to to do with it? Not everyone gets the cool, weird illnesses, sometimes people have to be treated for very mundane things and medical professionals need to suck that up and deal with it. Not that any psychiatrist has ever considered my illness “mundane”; I have in the past exclaimed I feel like a petri dish due to the interest given to me by those interested in the way the mind works.
I stared at this doctor in disbelief, while mentally describing him already as a “doctor”. We argued a little. He agreed to write to the “funny” psychiatry people and “see what could be done”. He mentioned the words Community Psychiatric Nurse to me, and my stomach fell with disappointment: CPNs do a valuable job, but their remit is monitoring, not treatment, psychiatric illnesses. However, I took it, because any half-decent CPN will know they need to refer me to a psychiatrist for full treatment.
It was only when the doctor had gone, I’m sure believing he had helped me, that what had happened started to sink in.
Someone with a serious, diagnosed and previously treated mental health condition contacted their GP for assistance. She was then told that her thoughts were “childish”, and kindly advised to “try not to think like that”, like she is some kind of imbecile. Furthermore, she was then informed that no one really cares about her illness (even though it’s ruining and control her life) and psychiatrists are “funny people”, before extracting a promise to at least send a CPN to visit her to do little more than cover that GPs arse in case she kills herself in the mean time (“look, I did try to help…”).
I kind of have to step back from it like that to really see how horrific it is.
And let’s be clear: the word ‘horrific’ is completely apposite here. People with mental health conditions are, by definition, mentally fragile. As I reeled from the experience, I suddenly thought: what if I hadn’t been diagnosed?
I could deal with what happened because I know what is wrong with me. Beyond the incident making me unspeakably angry, I came through it okay, because I am well aware what is wrong with me and I also know GPs are infamously poor at spotting mental health issues. I know that only 30% of OCD sufferers ever get the treatment they actually need, which is largely put down to a lack of awareness in general practitioners. I was informed enough to be angry, and educated enough to know that a psychiatrist will view my case very differently.
But what if I wasn’t? Rewind six years to when I “triggered” – the term used to explain the process when OCD manifests itself for the first time. At first, I thought I was going crazy. After two months of this, I went to see a GP, who told me I was stressed and not to worry about it. After another two months of mental torture, I went to see another GP, starting the conversation with a simple: “there’s something wrong with the way I’m thinking”. Thankfully, that GP had an interest in mental health, and diagnosed me with OCD on the spot, and within a fortnight I was seeing a psychiatrist.
But what if I hadn’t seen that second GP? What if I’d seen the guy I experienced on Friday? That period before my diagnosis was, without doubt, the darkest time of my life. This was reinforced all the more when the first GP told me I was fine. I kept thinking: “I’m not fine. I know I’m not fine. I know this isn’t normal. What the hell is happening to me?”. I cried with relief when I was diagnosed with OCD, because it had A Name, and Something Could Be Done. That was better than not knowing, than being unaware.
The first GP I saw merely told me I was stressed and that it would go away, which in itself was troubling enough. But if I had seen the GP I saw on Friday six years ago, I cannot bear to contemplate the effect it would have had on my mindset. I can say, for certain, I would not have gone for a second opinion only two months after seeing the first GP; words like “childish” would have rung around my mind and made me feel embarrassed, ashamed. Maybe eventually I would have broken anyway, and sought a second opinion, but when the memory of those four undiagnosed months is so fresh and horrifying… well, it’s hard to contemplate that timescale having been any longer.
GPs are not meant to be specialists, and I did not have unrealistic expectations of this individual. I don’t expect a GP to know OCD, to be able to treat me – but I do expect a GP to be able to recognise the issue and refer me to someone who does understand.
Here’s an excerpt from the front page of OCD-UK:
Listed amongst the top 10 most debilitating illnesses by the World Health Organisation in terms of loss of income and decreased quality of life, Obsessive Compulsive Disorder is thought to affect 2-3% of the UK population.
So OCD is not a rare condition. Even though my particular strain of OCD/HD is unusual, simply the letters “OCD” should sent flares of warning off for a doctor. Letters my husband and I both said, and appear scattered across my medical notes. So if a doctor can treat such a well-known condition in such a dismissive way, what of those people with hidden mental health issues?
Of course, this is one tale of woe in a long misery-filled existence for those with mental health illnesses. The social stigma is bad enough (and a primary reason why I am so upfront and honest about my OCD: I will not be ashamed of being ill), but the ignorance from the medical profession is something entirely different. I constantly see ill-informed idiots ranting about people with depression being on Incapacity Benefit, but that’s to be expected, they can’t know (and one should hope they never do know) how serious depression can be. But to experience the same level of ignorance and derision from a medical professional is disgraceful, and worse yet, it’s life-threatening.
This post is extremely long-winded, but I’m trying to make a serious point here. I’ve tried to give the full story and history of my condition for context, but in truth, this isn’t really about me. I’ve been diagnosed, I struck lucky with my second GP… many people don’t have that luxury. For all these problems, I got lucky – and in saying lucky, I’m simply saying I got the treatment I need and deserve. Somehow, it’s the fact that I consider myself lucky, that scares me most of all.