"One of the issues that I have under estimated is the psychological impact that MS has on you and your families. This is compounded by disappointment when science and medicine, which promises so much, fails to deliver. This is particularly acute for relapse-onset MSers when you pass from the relapsing into the secondary progressive phase of the disease and you realise that the disease-modifying therapies are not working or have not worked."
"In my sociology course at medical school we learnt about Helen Kübler-Ross's five stages of grief, best known by the acronym DABDA (Denial, Anger, Bargaining, Depression and Acceptance). For those of you with relapse-onset disease, not only do you have to go through these stages when you are diagnosed with the disease, but you go through them again when you enter the secondary progressive phase of the disease."
"MS is a double-disease; it hits you twice!"
"The realisation that the DMTs have failed leads to the re-emergence of grief and the five emotional stages that go with it. The anger is more often than not directed at the medical team for being impotent to stop the disease; exposing unrealistic expectations, which were made to give you hope. As a result of being an outspoken critic of therapeutic nihilism - the blight of our profession - a proponent of early aggressive treatment and a disciple for the active and holistic management of MS, I seem to be taking more flak than most. It is emotionally exhausting!"
"MS is a very personal disease and each MSer has their own story to tell. Researchers in general seem to forget this and simply think of MSers as a population of people with a disease. This is why our research day is so enlightening; the face-to-face interaction with MSers and their families makes you realise why you are doing what you do and its importance for individuals and their families. It helps you understand why MSers turn to alternative theories, and treatments, when science and modern medicine lets you down."
"As an MSer you need to know about the stages of grief and recognise your emotional reactions to the diagnosis and the onset of the progressive phase of the disease. The truth is we don't have any therapies to stop or slow disease progression, but we are working on it. If you have symptoms that are impacting on your quality of life we can help. You would be amazed what a difference symptomatic treatment can make to your life."
"Finally, I would like to add an extra A onto DABDA for MSers, ie. DABDAA. The extra A is for anxiety. The uncertainty that a comes with a diagnosis of MS is unprecedented. If you need help coping with anxiety or any of the other emotions mentioned above please speak to your medical team."