I recently saw a patient for a second opinion. She was unable to tolerate dimethyl fumarate (Tecfidera) and has stopped taking her medication about 6 months ago. She was fully functional and apart from mild sensory symptoms, fatigue and intermittent ‘brain fog’ she felt ‘okay’. She was reluctant to start another DMT. She subsequently had an annual MRI that showed at least 4 new lesions with one large lesion that was enhancing in the parietal lobe. Despite being recommended to star on a more active DMT she chose to wait and see what would happen over the next few months. Her diligent MS clinical nurse specialist didn’t like the wait and see attitude and recommended she saw me for a second opinion.
It was clear when the patient came into the room that she was very anxious and rapidly become clear she had not come to terms with having MS. She was clearly in denial and had not accepted having MS. I therefore went back to basics and discussed the emotional reactions and uncertainties that are triggered when someone is diagnosed with MS. I explained that the psychological impact that MS was having on her, and her family, was being underestimated. It was also clear that this young woman had no idea of how to deal with the uncertainty associated with having a disabling disease.
It was clear that this patient left my consulting rooms a little less anxious than when she walked in. What the consultation taught me is that denial is a very strong emotion and unless you tackle it head-on it often impedes rational decision making about MS treatments.
One of my other patients has previously suggested we add an extra A onto DABDA for pwMS, i.e. DABDAA. The extra A is for anxiety; the uncertainty that a comes with a diagnosis of MS about what will happen in the future.
I suspect most pwMS who read this blog are beyond the diagnostic phase and the emotion of denial. If you are not, or if you, your partner or other family members have persistent anxiety, can you please arrange to see your neurologist or MS nurse specialist to discuss things in more detail. There are many treatment option we can offer you to help cope and come to terms with the diagnosis of MS.
Tams et al. Helping families thrive in the face of uncertainty: Strengths based approaches to working with families affected by progressive neurological illness. NeuroRehabilitation. 2016 Mar 23.
BACKGROUND: Management of the uncertainty inherent in a diagnosis of a progressive neurological illness is one of the major adjustment tasks facing those affected and their families. A causal relationship has been demonstrated between perceived illness uncertainty and negative psychological outcomes for individuals with progressive neurological illness. Whilst there is a small and promising intervention literature on the use of a range of individually focused strengths based psychological interventions there appears to be little guidance available how clinicians might help those family members of those affected.
OBJECTIVE: To undertake a systematic review of the evidence on the use of strengths based, family focused interventions that target illness uncertainty.
METHODS: A systematic literature search was undertaken using the National Library for Health abstract database.
RESULTS: Five papers were included in the review, only two of which were published in peer reviewed journals. All five reported on strengths based approaches that could be used with families but only two explicitly identified illness uncertainty as a target. Outcome measures were heterogeneous so data could not be aggregated for meta-analysis. The results suggested that these interventions showed promised but the review highlighted a number of methodological issues which mean that the results must be interpreted with caution.
CONCLUSIONS: There is very little evidence of the use of strengths based approaches to helping families manage the uncertainty associated with progressive neurological illness despite it having been identified as a key target for intervention. The review highlights the need for the development of an intervention framework to address this key clinical issue and suggests one model that might show promise.