When doctors are stumped with a difficult patient, they will often refer the patient to a specialist, in order to help them with the diagnosis and management.
However, while specialists can be very skilled at making the right diagnosis, they are often not very interested in helping the patient to learn to live with his disease. This is not an area which is of much interest to them, and not their core competence either.
However, after the diagnosis has been made, the patient's life still carries on - and he is often unsure where to turn for help.
For example, let's look at a young woman who goes to her family physician with the problem of blurring of vision. The physician dutifully refers her to an ophthalmologist, who then sends her on to a neurologist, who makes the diagnosis of multiple sclerosis. The doctors pat themselves on their backs, for having come to the right diagnosis so efficiently - and the patient is grateful that at least now she knows what her medical problem is. However, she still has to learn how to live with MS, and learning how to cope with a chronic illness is often the hardest part of having MS.
Unfortunately, this is something about which none of her doctors is well-informed ! The neurologist knows a lot about demyelination and how this affects nerve function - but he cannot teach her much about how to come to terms with her illness ; and how to manage her activities of daily living. How does she deal with her fatigue ? with a cranky child ? arm weakness ? her fears that she may become wheel chair bound ?
The best source of this expertise is not going to be a doctor - it's going to be an expert patient - someone who has lived with MS for many years, and is willing to share their heard-earned wisdom and experience.
Good doctors have always done this informally for many years - and it's been proven that support groups are a great way of helping patients to cope with their illness. It's now also possible to have online support groups, where patients can reach out and connect with each other.
Doctors can also learn a lot from expert patients. Thus, while a diabetic specialist knows a lot about the metabolism of insulin and how to program an insulin pump, he may not know much about what you need to do about your diet and activity in real life ( for example, when you have to attend a marriage or go out for a holiday). You may think these are "silly questions" and may not want to bother your doctor with these trifles - but the fact still remains that you need reliable answers !
It's best to learn these pearls of wisdom from other patients. They will be much more
empathetic - and their advise is likely to be much more practical, as it is based on their real-life experience - not on what a text book says ! Also, while it may not always be reliable ( because patients can be poorly informed sometimes), at least you know it will be provided with no vested interest !