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For people with ankylosing spondylitis, the relationship with their rheumatologist can be a complicated one. We’re a vital source of support but, at the same time, seeing us is a constant, sharp reminder of the way their life has changed since developing AS. In addition to this, most people with AS experience a very long diagnosis period followed by a fast prognosis. They go from their physician not being tell them what’s wrong to finally identifying their condition and straight away learning it’s incurable.
It’s natural that a rheum’s first few appointments with someone newly diagnosed with AS are characterised by frustration and anger on the patients part. It’s also vital at this point to help them start working productively to fight back against their disease.
I begin this process by asking general questions – how much do you know about AS, what’s the history of your diagnosis etc. – but I try to get specific as quickly as possible. The most helpful thing my patients can do for me is to get personal. I need them to tell me exactly what practical difficulties they experience on a day-to-day basis and what their short- and long-term treatment goals are – their personal definition of remission.
This can be surprisingly difficult information to uncover. To begin with, many patients have a rather short-term perspective, focussed simply on being able to manage their everyday activities without pain. I’d estimate that only around one in ten patients I see raises the subject of long-term goals and remission by themselves and so I see it as my duty to widen their horizons and get them thinking about the future again.
For me, an ideal consultation would start with a thorough medical examination and an in-depth discussion of patient targets and how both patient and doctor feel these can be achieved. Then both parties should form a plan for the patient to follow to reach these targets, keeping them positive and motivated until their next consultation.
This is a lot of ground to cover in the limited time available for an appointment so the right approach is vital. Here are a few tips for both doctors and patients to make each appointment as positive as possible.
AS is an intimidating condition and one which no-one can face alone. However, with our support and with a clear plan, people with AS have a fighting chance at the life they want to live.
Dr Shashank Akerkar is a Consultant Rheumatologist at the Mumbai Arthritis Clinic and Research Centre in India. Describing himself as a ‘patient-centric Rheumatologist’, Dr Akerkar regularly tweets and blogs on a range of rheumatology topics (including ankylosing spondylitis). He is also the creator of an app specifically for patients with lupus.
Take on AS with an army behind you. Patient support groups can be there to celebrate with you in the ups and pick you up in the downs. They’re also great places to get practical advice about living with AS.