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Rare Disease and Not Being Heard by Your GP

Rare disease, you and the GP

Living with a rare illness is a struggle. Dealing with an ignorant GP increases that struggle.

Those feelings of not being listened to, increase the isolation, ramp up the stress and contribute to disease progression.

I do not use the term ‘ignorant’ as an insult, rather I chose it to reflect the true meaning of the word.  Ignorant = destitute of knowledge

Rare Diseases and GP Treatment

A GP’s case load normally consists of the everyday ailments of living plus a few more rarer ones.  GP’s are not trained to know about the rare diseases that patients present with. This is where the problems can start.

Trying to inform your GP about your rare disease and the tests you currently need is often akin to tip toeing through a volcanic minefield. Why is this? It’s rather simple. Most GP’s have been conditioned to believe they know most things about our health. Repeated consultations with grateful patients reinforce this.

GP’s can occasionally become omnipotent. Faced with a patient who knows more than them about a certain condition, (we raries must do in order to survive), can be threatening to their self-perception. They do not like to feel small and may immediately and unconsciously deflect or project on to us.

This has often happened when the patient comes away feeling a hypochondriac, or a timewaster. The patient shuffles away feeling awful and the normal power inequality is restored. What has happened is rarely questioned, except perhaps in a therapist’s room.

How to Assert Yourself if You’re Not Being Heard by Your GP

It can be very helpful to take a second when you feel talked down to and patronised. This is your moment to regroup and have another go.

1. Hold your ground

2. Repeat your requests slowly and clearly in a non defensive tone.

3. Remain measured and stay in adult mode.

Your GP will feel less threatened and reduce the superior tone. He or she will have no choice but to operate in adult mood as well. This normally produces a win situation. You, I and our families lose when we walk away feeling stupid.

It is also critically important to research as much as you are able and make sure your information is correct to help yourself. Lastly, I recommend getting a book on assertion if it is hard for you to stay in control in difficult situations, or you can find some great internet resources on how to be more assertive in general.

Guest Writer – Tizzard Psychology



chronic illness management Uncategorized wellbeing0 comments