This site uses cookies. By continuing to browse the site you are agreeing to our use of cookies.

close x

Category Archives: chronic illness management

Rare Disease and Not Being Heard by Your GP

Facing ignorant GP described using Ignorance sign on white wall

Are you struggling to explain your illness to 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).

chronic illness management communication wellbeing0 comments

Acceptance is the New Super Power

Sense of acceptance and composure represented by clasped hands monochrome photo with woman in striped jumper

Learning to accept and sit with the facts can take time and emotional energy.

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 your head round the term ‘acceptance’: accepting that the illness is now an enduring part of life.

Most people struggle with this concept, because acceptance is frequently mistaken for submission, or giving up. The schema most of us hold is that giving up means ‘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.

Yet acceptance of an illness, and of the impact it has on your 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 you acknowledge 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, you are gently but firmly taking control of your 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 – but acceptance paves the way to a different life, fully lived within the current reality. And if you wonder 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.

Written by Dr Chrissie Tizzard, Chartered Consultant Psychologist, PsychD, BSc, MSc, C.Psychol, C.Sci, AFBPS. Dr Tizzard is the Clinical Director of Christine Tizzard Psychology (ctpsy.co.uk). 

If you’re looking to deal with pain management and negative thought patterns as part of your chronic illness, you may want to consider CBT (Cognitive Behavioural Therapy). Click here to find out about CBT with Christine Tizzard Psychology. 

chronic illness management0 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