The complexities of depression in MS

By Dr Sally Shaw

Let’s take a fresh look at our psychological health, and maybe more specifically what is meant by depression, what symptoms of depression look like, how we tend to frame it in people with MS, and what we can do about it.

Also, have you heard about this thing called COVID-19?  Whether you have MS or not, mood and emotion is being affected at the moment due to the current pandemic, relentless lockdowns, restrictions to freedoms, and 24/7 news reports of numbers of cases.  Many of us are reporting feeling low, flat or depressed.  How do we look after ourselves to make sure we steer away from depression or recognise the symptoms for what they are if we encounter them?

Depression is a really tricky symptom of MS, in so many ways. So, what do we know about MS and depression?

Well, it’s complicated. Depression, as it affects the general population, is a syndrome. A psychiatric/mood/affective disorder. This form of depression (that, we as a society, are getting better at talking about) is often known by the medical profession as ‘Major Depressive Disorder’.  To be diagnosed with depression, one has to meet at least 5 of 9 predetermined criteria.  Simple, right? No. It’s not quite that simple in people with MS, because the criteria include poor concentration, fatigue, and altered sleep patterns.  When someone comes to see me for psychological counselling, they have already done a screening assessment with their GP to see if they have signs of psychological distress, linked to depression or anxiety.  The first question on the screening assessment is ‘In the past four weeks, about how often did you feel tired out for no good reason?’.  When I discuss this first question with my clients, I am sure to be met with laughter, rolled eyes or a groan; ‘yeah, well is that because I’m depressed, or because I’ve got shocking MS fatigue?’ one of my clients said.  Ah, the complexities of the many invisible symptoms of MS, strike again. It is often hard to navigate around symptoms that exist in both diagnoses of MS, and diagnoses of major depressive disorder.

There are also other mood disorders that are seen widely in people with MS.

‘Adjustment Disorder’ observes symptoms of depression as a result of reacting to the diagnosis of MS, or its subsequent challenges, or as a result of responding to other difficulties in life too (enter COVID lockdowns/homeschooling/grief related to isolation and lack of certainty). And of course, this makes sense as there can definitely be a reactive component involved in mood changes for people with MS. It’s not easy to be diagnosed with a chronic neurological, potentially degenerative, disease. So, yes, it can take a psychological toll. Meanwhile, another mood disorder called ‘Depressive disorder due to a medical condition’ implies that the MS is causing the symptoms of depression via the inflammation that occurs, or the degeneration of brain matter. Not a response to the diagnosis, or how difficult it may be to live with what MS throws at you, but because of the organic nature of MS in your body itself.

Three very different causes of similar depressive symptoms. Clinicians attempt to differentiate between symptoms of depression that are a result of a major depressive disorder, a reaction to being diagnosed (or living with challenges of MS), and depression that may come with the pathology of MS.  As Feinstein et al (2014) point out, a distinction between depression as a symptom, and depression as a syndrome, must be sought (but it’s really hard).

And to top off the complexities of depression in MS, adaptive coping strategies can mitigate the experience of mood changes as well, which means that what you do in response to depressive symptoms, can make them better or worse. Coping strategies are really important – they can be a protective factor against depression and they can help to get rid of depression too.  Employing problem-focussed strategies (such as strategic planning or time management) can reduce the sources of stress in your life. Alternatively, a reliance on emotion based approaches (such as distraction, escapism, or drugs or alcohol) won’t be as helpful. Active coping strategies, rather than avoidant strategies, are good.  For the most part it makes sense.  At times it might seem counterintuitive considering MS is so unpredictable, and the uncertainty is so real (‘I don’t have control anymore’), but the stresses MS brings can still be managed within a framework of active coping and employment of a problem focussed approach.

Looking at the numbers (about 50% of people with MS will experience depression at some point in their life – a figure 2-5 times higher than the general population), it is abundantly clear that there is a strong link between MS and depression. Depression is one of the invisible symptoms of MS that affects more people than you probably think.  A proactive approach to treatment of MS related depression is needed, and should offer a more aggressive, multimodal treatment approach.

So, what’s the take away from all of this regarding your mood? 

Watch out for a persistently low mood, together with a loss of interest or pleasure in daily activities. If you are feeling down or flat, and not getting much joy in the usual things, then you should definitely speak up. Be strategic! Your GP is probably the best place to start. Book a double appointment (it’s best to be able to have more than a few minutes with them to have a chat about how you’ve been feeling), and see what is on offer.  It could be medication.  It could be counselling.  If you’re really lucky it could even be a combination of a few strategies that have been shown in the research to work. Medication, Cognitive Behavioural Therapy (CBT), exercise, solution focused therapy, mindfulness based CBT, stress management training, or even exercise (but you knew that already!) can all be helpful in treating depression experienced by people with MS. Your GP might give you a Mental Health Care Plan and the name of a psychologist who has some expertise in this area (hopefully!), or you can do your own research and take a name or two with you as suggestions.

The bad news is that people with MS are more likely to experience depression at some point in their lives, the cause of which might be complicated (and COVID doesn’t make it easier) but the good news is that there is more than one option to engage in, in order to treat this invisible symptom of MS.

Dr Sally Shaw is a psychologist living with MS in Melbourne. She has worked with people living with MS for almost 20 years, and is the creator of the online course MS: Get Your Head Around It! which can be accessed here. Parts of this article were originally published on the MS Australia website as part of the Health and Wellbeing series: Multiple Sclerosis and Depression. It is seriously complicated.
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The complexities of depression in MS