In his latest blog on MS and mental health, Will Berard writes candidly about the impact depression has had on him, and why we need to get better at recognising depression as a symptom of MS, and not just "because MS is a bummer. Man"
Each year, a fifth to a quarter of people with MS will experience major depression. This prevalence is larger than in the general population, which is understandable, but also larger than in people with other chronic conditions, which deserves further explanation.
Depression as a symptom of MS is underestimated and misunderstood. Because it is an invisible symptom but also because it is, in people’s minds, conflated with depression as a comorbid disorder of MS.
The former is when the actual demyelination and inflammation of multiple sclerosis causes depressive symptoms. The latter is someone being more likely to experience depression if they have a serious or lifelong condition, and more so following diagnosis and episodes of disease progression.
Talking of depression as a comorbid disorder is essentially a fancy way of saying that living with MS is a self-evident bummer. So much so that people with no knowledge of MS (the ‘muggles’) will more often than not make the assumption that depression in MS refers solely to this particular flavour.
It is so obvious that the prospect of life with a condition like MS is depressing, that it bears repeating, over and over again, to muggles and people with MS alike, that there is also a physiological basis for depression in MS. It is an actual symptom of the disease. It is not just because MS is a bummer. Man
In addition to these two etiologies* of depression, some people with MS will also have to contend with whatever depression they were living with prior to their first symptoms and diagnosis. I am writing from experience here, depression having been a near-constant feature of my life since my teens. I have walked the Black Dog. I have felt the cold hand of despair on my shoulder. I have crossed the Slough of Despond. And continued on through the Maidenhead of Despond, all the way to Reading of Despond.
And, by and large, before my diagnosis, I did very little about it. It is difficult to ask for help, particularly when you’re a man (Thanks, patriarchy!**). There is the social stigma, which is abating, when not paradoxically reversing into a cachet of despondency, but it is not just that. Depression carries its own internal meta-bummer: you feel bad about how bad you feel.
It is by no means unique in that respect: what Mark Manson calls the feedback loop from Hell (or the Buddha a ‘second arrow’ ) is a feature so central to neuroses it nearly defines them. But depression’s loop features a degree of shame that’s absent from, say, worrying about how much you worry.
But what is this shame if not a manifestation of internalised stigma? We can fix attitudes in society all we want, but dealing with what we’ve internalised is a personal responsibility, not a collective one. This issue is familiar to the LGBT community: they will confirm it is far from easy.
Once I was diagnosed, though, being able - being allowed - to see depression as both a symptom and a comorbidity of MS must have been a liberation, as within a week of my diagnosis, I went to my GP to get started on antidepressants, and self-referred for some counselling. I was acutely aware that, with a number of risk factors stacked against me already, I needed to tread lightly and get all the help I could if I wanted to avoid ending up being someone else’s Richard Cory.
Looking at mental health issues as symptoms of MS gives them an instant parity of esteem, because when it comes to handing out symptoms, multiple sclerosis itself doesn’t discriminate between physical and mental. It is something I have touched upon in my post on anxiety.
It is not immediately obvious why a physiogenic etiology would make a condition easier to bear than a psychogenic one. This is certainly not coming from the condition itself, as subjectively depression is depression (is depression) whether it’s a symptom, a comorbid disorder, or a pre-existing condition. It is the second arrow again: the way one relates to a condition is as important in its impact, if not more, than the condition itself. The generalised version of this statement is a conclusion that Stoics and Buddhists have reached independently twenty-five centuries ago, and yet we still, too often, cannot help but see our wellbeing as hinging on external circumstances rather than on the way we relate to them.
If anxiety is the stiffness of the mind, depression is the fatigue of the soul. It’s lethargy, a lack of energy, motivational as opposed to cognitive or physical, a loss of libido, in the Jungian rather than Freudian meaning of the word.
In that light, it is not surprising that CBT helps with fatigue***: it helps the way one relates to the symptom. Similarly, mood tracking serves the same purpose as fatigue journalling: It sometimes takes a bit of record keeping to have objective evidence you’re doing better than you thought. It helps focus on the positives, by making it able for them to be noticed in the first place.
I used to be depressed, anxious, and miserable about it all. Now, after having been medicated, counselled, analysed, therapised (both cognitively and behaviourally), and self-helped, I’m depressed, anxious, but I’m OK with it. And that will have to do. Sometimes you have to take whatever win you can get. Man.
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*) Etiology, in medicine, is the cause, or set of causes, of a disease or condition. It’s an important concept for treating the root cause of a problem rather than its symptoms.
**) When researching this piece, it came to my attention that CBT is much maligned in the Chronic Fatigue Syndrome community. It makes sense to me: offering a psychological treatment for a condition whose etiology is still debated raises hackles, because it is seen as somehow indicating a psychogenic etiology. Stigma much?
