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Monthly Archives: July 2017

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

Acceptance is the New Super Power

Acceptance really is a super power. Most of the time living with a chronic illness is hard. It is a journey into the dark unknown. A journey we did not want or plan for.

One of the hardest tasks in adapting to life changing illness is to get one’s head round the term ‘acceptance’. Accepting that the illness is now an enduring part of life.

Most people struggle with acceptance. The reason why this struggle exists is very simple. Acceptance is frequently mistaken for ‘submission or with giving up’. The schema most of us hold is that giving up is ‘throwing in the towel’. Culture itself increases the struggle. There is a false belief that to live fully we must be always pushing forward. Pushing forward usually means achieving and amassing. Even if that pushing forward becomes harmful in some cases. Acceptance of an illness and of the impact it has on one’s life is not giving up or submitting. In this case, acceptance is simply an acknowledgement that the disease or illness is there and, like it or not, it has an impact.

How Acceptance Can Change Your Outlook

The wonderful thing about acceptance is that when you reach it, a layer of suffering vanishes from the daily struggle. When one acknowledges the fact that an illness is present, instead of fighting against it – stress is lessened and some joy and autonomy returns. Now that is moving forward and it can be a catalyst for growth.

This acknowledgement allows strategies to be developed to reduce the impact of the illness on both yourself and those close to you. Realistically, as well as lessening stress one is gently but firmly taking control of one’s life, rather that coping with the extra pressure of fighting it.

Put simply, acceptance brings both freedom and peace. This is not a gloss over. Chronic illness is very hard – often it is brutal. Acceptance paves the way to a different life, fully lived within the current reality (if you’re wondering what a full life can mean in this sense, Psychology Today has some useful insight on living well with chronic illness).

Non-acceptance means a continued struggle with little chance of adjustment and a greater level of pain, physical and emotional.

Acceptance transcends hope or fear – it is simply seeing reality as it is.

 Christine Tizard Psychology 2017

chronic illness management0 comments