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Category Archives: wellbeing

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

Chronic illness has secrets

Chronic illness has secrets

Chronic illness has secrets

Chronic illness has secrets

Chronic illness has secrets.  These secrets often don’t get aired by the daylight. Most people with a chronic illness or rare disease struggle with daily life. Those struggles are usually hidden from the world.  Popular psychology says that a positive attitude helps matters. It is true, being optimistic does help many things.  Let us be honest though. The British bull dog spirit often falls way short of helping those with chronic illness cope their new imposed reality.  At times the maxim can be simply patronising.

The secrets of chronic or rare disease

1. People with chronic illness are always trying to adjust to uncertainty about or change in their physical state. The sword of Damocles that hangs with an unknown prognosis causes anxiety. Individuals are often unable to talk about these fears. They are scared of being labelled moaners or  hypochondriacs.

2. Sufferers of chronic illness feel very alone.  This is also true in rare disease. The medical profession frequently does not understand their condition because it is so rare. The lack of knowledge by professionals about a rare disease usually results in the person researching all they can about their illness.  This is not a fixation but an attempt to maintain some control, a control that may even save their life. An awareness that there is a likelihood that you will have to advocate for yourself when vulnerable during a crisis in order to get correct treatment is scary.

3. People with chronic illness often try to micro manage life.  These real fears about a health emergency can make the person stop doing normal things.  This attempt to reduce the possibility of crisis can lead to further shrinking of life and a growing feeling of personal isolation.

4. Sufferers know that there is absolutely no certainty that the task or activity they did easily today will be able to be repeated tomorrow. The body is in charge and it can be mean abuser of the spirit.

5. People with chronic illness often feel angry, guilty or sad. This is because their hopeful plans made weeks in advance may need to be cancelled at the last moment because of a surge in symptoms. This weakens the individual’s support network further as ‘friends’ often don’t get it. Unwell people begin to be seen as unreliable rather than ill.

6. They may not get the support they need because they look  good on the outside when there is an invisible but major inferno going on inside.

If you are battling a chronic illness or rare disease.  It’s a pretty smart idea to give yourself a gentle pat on the back. Remember you are not alone, that you are a fighter.  Lastly, know that there are many others there in solidarity with you.

chronic illness management wellbeing0 comments