As people with complex health conditions and also for those that support us, it can be easy to let the ‘professionals’ call the shots when it comes to decisions. They can be decisions large or small, but perhaps if we get into a cycle of always agreeing with these professionals without question, we may also do the same with the more important decisions.
Going back in time when my Mum and Dad were around, their generation seemed to hold Doctors in an almost hallowed position, where if the GP said you needed to take a pill or take a course of action, you simply trusted and went along. I know I had been to GP appointments with my Mum and the GP had said that he thought he would increase the dosage of one of her medications. Mum sat and did not comment or ask any questions. Me being me, as a daughter and also as a long term Social Worker I would ask the GP at least these things.
- What medication was being changed?
- What was it for?
- Why was it being changed?
- What possible side-effects could it produce. An example of this is if being prescribed with codeine this can often cause constipation. By clarifying this then, we could then ask if a laxative product could be prescribed and/or if there were other ways to combat constipation.
So now it is my turn to be my own advocate. Don’t get me wrong, I have an excellent GP and I do trust him, but I usually ask why he is prescribing a medication and the other questions above or similar. If he refers me for a test or to a specialist, I ask what the test is and what the tests may be looking for. I have also been known to tell him a course of action I think I need to take. For example, with the pain I am experiencing in my feet, I spoke to my GP and said I thought it would be good for me to see my Rheumatologist and it was my GP’s turn to ask why. I advised that I have had the same Rheumatologist for perhaps 15 years and as it has been mentioned that my foot pain may have something to do with arthritis – which is one of my collection of maladies – I felt he would be the best person to answer that question. He would also be the person to then be able to suggest some kind of treatment. My GP agreed that this could be useful. However, if I had not asked the question, he may not have thought of it as I have not had any particular issues with my arthritis since he became my GP. In this scenario I was definitely the expert in knowing my professional resources that may be able to answer the tricky question of ‘”what the heck is going on with my feet!”
To be an advocate does not imply that you need to be confrontational. It may be that you need to be firm in saying what you need or want, even if the GP sitting in front of you doesn’t think it is necessary. In fact, in one of my very earliest blog posts I wrote about how GP’s are often reluctant to refer for a neurological assessment to assess for Parkinson’s. I know when I asked my previous GP to refer me, he was very reluctant. You can read the post if you want more detail. Suffice it to say, I firmly insisted that he refer me to the Neurosurgeon that my parents had been under. He did so and I was vindicated – if I need to be – as the specialist had absolutely no hesitation in diagnosing me with Parkinson’s. If I had waited for my GP to be fully on board, I am sure I would still be waiting and wondering.
So, if you find yourself sitting in front of someone – it doesn’t have to be a health practitioner – I would encourage you to ask questions and have your opinions heard. Advocacy can be a challenging thing to practice if you are not used to it and you may find that having someone you trust with you will give you the confidence to be heard.
So, next time you are in front of someone who appears to take over your decision making process or doesn’t seem interested in your perspective, I encourage you to ensure that your voice is heard and respected.
Advocate for what you need, not for what others say you need. However, it may be the case that you are in need of a course of action that you may not be fully aware that you need. Having another person with you can be invaluable to ask questions or to support you to ask questions that you need answers to.
Remember.
You are the expert in you.
Make sure that your expertise if recognised and respected.
Be your own best advocate.
Here’s the link to my podcast about this topic
My journey with Parkinsons 