The two most common responses when people learn I have ME are “Isn’t that the one that makes you tired?” and “So that means you’re depressed then?” I tackled the first of these assumptions in a previous post; I intend to address the second of them now.
It is a common misconception, even among medical professionals, that ME is synonymous with depression. In many ways this is understandable as both share symptoms in common. Both conditions can cause debilitating headaches, fatigue, and weight-loss or weight-gain caused by changes in appetite. Both make it difficult to accomplish everyday activities or maintain former levels of personal hygiene, fitness, employment and social contact.
The same however could be said of any number of chronic health conditions, whether mental or physical, and as similar as these symptoms might appear to be, the underlying cause is not the same. In addition, many symptoms of ME are not typically found in clinical depression: orthostatic intolerance, seizures, paralysis and low blood volume to name but a few.
As one of my doctors explained, even without access to specialist testing or the presence of obvious neurological symptoms, there are two easily identifiable differences between depression and ME.
- Patients with depression typically feel better after exercise, as the release of endorphins helps alleviate their symptoms. ME is characterised by Post-Exertional Malaise: a disproportionate worsening of symptoms over hours or days after even minimal exertion.
- Patients with depression have the physical capacity to engage in everyday activities but lose the desire or sense of purpose that motivates them to do so. Patients with ME do not lose interest in any of their former activities but rather the physical ability to do them. Ask most people with ME what they’d do if health was no longer an issue and they’ll give a list so long that you’ll find it difficult to stop them. Many people with depression however, would struggle to answer.
Every time I’ve been admitted to a general medical ward, I’ve been referred to the psychiatric team by doctors who assume that because I have ME, my symptoms must be somatoform or caused by clinical depression. Psychiatrists have each time concluded that I show no indications of depression, anxiety, or the psychosomatic causes doctors assume I must suffer from.
Despite my diagnosis having come from a neurologist, the very first social worker assigned to my case wrote ‘undisclosed mental health disorder’ in my case file, presuming my symptoms to be psychosomatic. It took almost seven years to have this label removed from my file no matter what I did to try to correct it. At one point I even asked my doctor if I’d been diagnosed with something I hadn’t been told about as I couldn’t understand why those words kept reappearing.
Unfortunately there is a danger that by refuting suggestions their illness may be psychosomatic, ME sufferers give the impression they don’t view mental illnesses as real or serious. So let me make it absolutely clear that I in no way doubt the seriousness of psychiatric disease. I am well aware that mental health disorders are not ‘all in the mind’ but involve measurable physiological change. I have known enough people with bi-polar, schizophrenia or depression over the years to understand that these are very real and debilitating conditions that carry enough stigma already, without my inadvertently adding to it with careless comments.
Of course it is common for patients with ME, as with any other chronic illness, to suffer from mental-health conditions like depression or anxiety in addition to their primary illness, but co-morbid mental health issues are symptoms of their illness, not the causes of it. The fact is that dealing with physical illness is hard, and leads to emotional issues that need to be dealt with. When patients point out the inadequacy of taking a psychiatric approach to the treatment of ME, they aren’t rejecting the wisdom of offering anti-depressants and cognitive therapies to those with mental health symptoms as a means of helping them cope better with these symptoms. The problem occurs when these treatments are touted as a cure for the underlying neuroimmune disease and allowed to become a substitute for biomedical research.
It can take many months or years for doctors to diagnose a patient with ME and in the meantime, sufferers are often dismissed as hypochondriacs and told there is no physical cause for their disease. It is common therefore, for patients that do go on to develop co-morbid depression, to feel ashamed to ask for help for fear that doctors will conclude their initial dismissive assessment was right all along. As a result, many patients who would gain significant benefit from psychiatric help end up going without.
It is a damning indictment of attitudes to mental health in this country that so many doctors and social workers (believing patients to be mentally, not physically ill) are willing to leave ME patients with little or no support. It took six months on a psychiatric liaison ward (the only inpatient service to deal directly with ME) with no resultant mental-health diagnosis, for me to convince social services that my problems were primarily physical in origin. Only then did they agree to put an adequate care plan in place, despite the fact that I’d been bedridden for almost two years and had been referred to them by doctors on more than one occasion. I know that my experience is by no means an isolated case.
It ultimately shouldn’t matter whether ME is physical, mental, or the two in combination, the fact is that it ruins lives. Any illness that leaves people bedridden, housebound, isolated or jobless needs to be taken seriously. Patients with ME (as well as those with mental illness) deserve to be treated with the same compassion and respect we’d expect to see afforded to any other illness, from chickenpox to cancer. The difference this would make to the quality of patients’ lives is simply incalculable.