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.
|Rheum Recommendations||Patient Pointers|
|As a rheumatologist, remember that your patients see you as the authority on their condition and may not challenge you unless invited. Ask for feedback.
||You are much bigger than your disease. Remember who you were before your diagnosis and work at finding that person again.
|Think about the condition but think about the person too. AS brings with it a great number of emotional issues, secondary to the disease, which your patients also need your help dealing with.
||Always consider your rheumatologist as a friend and a guide. Remember – AS is your real enemy and your rheum is there to help you beat it.
|Set clear goals for your patients and work with them to plan how to reach these goals. By breaking the journey down into manageable steps, you can stop patients feeling overwhelmed by the challenges of living with AS.
||Discuss your life goals with your rheumatologist. No matter how difficult these goals may seem to achieve, do not compromise on them unless your rheum agrees that it is absolutely necessary.
||Maintain a positive attitude – it genuinely enhances your treatment. Always remember that AS needn’t be a barrier to living a fulfilling life.
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.
For more advice on making the most of your appointments, read Ronan Kavanagh’s in-depth guide or Philip Robinson’s physician’s eye view of the AS patient journey.
This article was written by Shashank Akerkar, with help from the resident experts at ThisASLife.com. A social site helping the whole AS community to: Learn. Share. Inspire. Discuss.