Rare Disease and Not Being Heard by Your GP
Living with a rare illness is a struggle, but 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 means ‘destitute of knowledge’: in this case, a GP who doesn’t know what it means to live with your rare illness day in, day out, and doesn’t know how debilitating its symptoms can be.
Rare Diseases and GP Treatment
A GP’s case load normally consists of the everyday ailments of living, plus a few rarer ones. GPs are not trained to know about the rare diseases that patients present with, and 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. The majority of GPs have been conditioned to believe they know most things about our health. Repeated consultations with grateful patients reinforce this belief.
GP’s can occasionally become omnipotent. Faced with a patient who knows more than them about a certain condition (as we rarities 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.
When this happens, the patient comes away feeling a hypochondriac, or a time-waster. The patient shuffles away feeling awful and the normal power inequality is restored. What has just happened is rarely questioned, except perhaps in a therapist’s room.
How to Assert Yourself With 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. Remember these three simple steps – you could even write them down and read them before your consultation.
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 mode’ as well. This normally produces a win-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 to, and make sure your information is correct, to help yourself. Fortunately, there are many great blogs available online, where people with a rare illness have described the same symptoms and GP frustrations as you. Try typing the name of your illness, plus the word ‘blog’, into a search engine: for example, ‘chronic fatigue syndrome + blog’.
Lastly, I recommend getting a book on assertion if it is hard for you to stay in control in difficult situations; alternatively, you can find some great internet resources on how to be more assertive in general.
Written by a guest blogger for Christine Tizzard Psychology (ctpsy.co.uk).
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