An opinion piece by Megan Hackwood
You see it all the time on TV; a patient presents to the hospital with a mysterious pain or problem, the medical team solves the mystery with a diagnosis, and a cure or management plan is put in place before the episode ends. This is the ideology of medicine that we all grow up to expect – that every health problem we have will be listened to and receive proactive treatment and diagnosis immediately, just like on TV.
Unfortunately, what happens in real life falls incredibly short of those expectations, and those of us with ongoing health issues learn that we need to become our own advocates. As a person who has been diagnosed with multiple chronic health diseases and complications, I have experienced many different encounters with medical professionals. Many wonderful, however, for every wonderful experience I’ve had, there are at least three that were not.
Shifting your mentality about what being a patient means is key here - moving from a passive approach to a more proactive one. Your voice has power, and you deserve to be acknowledged and taken seriously. Speaking from 10-plus years of experience, these are my top tips for advocating for yourself and taking a proactive approach to your healthcare:
1. Keep on top of your symptom tracking
Keep detailed notes on your symptoms and habits wherever possible. Doctors may want to know your routine for everything from sleep to frequency of bowel movements. Keeping track of your symptoms will also involve noting what you did to manage them, such as taking medications or even applying a heat pack. This information helps to communicate what you experience to your doctor.
It can be incredibly overwhelming to do this when you’re already feeling unwell, but I promise you, once you build it into your daily routine, that overwhelm will gradually subside.
2. Identify medical gaslighting
I’ve had many experiences where I’ve been told that symptoms have been in my head when a cause has not been obvious – this is medical gaslighting. Being dismissed may be triggering, create feelings of unease and lead to depression and anxiety. This does not mean that the original problem is in your head and should not justify the dismissal of your symptoms by your doctor.
3. Do your own research
Researching your medical condition or symptoms can be helpful in improving your health literacy, finding information to discuss with your doctor, or gaining a better understanding of how your body functions. Always look for reputable websites with peer reviewed resources.
Collate your research to make it digestible for you and your doctor, so that when you next visit you can discuss your findings and work through them together. Your doctor will be able to fill in any blanks and help to increase your understanding by relating that information to your specific health situation.
Asking your doctor for any resources or recommendations they have is also important, as they often have access to a range of helpful information as well.
4. Build yourself a medical team
It’s impossible for your GP to know everything about every health problem, medication and treatment option available. Therefore, building a team of health professionals with areas of expertise and having them advise you collectively is important.
In my experience, having a GP, a therapist that I am comfortable working with, a pharmacist to ask medication questions, a physiotherapist to help with movement, and relevant specialists is a great start in creating a medical team. My team helps hugely in finding balance and relief with my chronic health conditions.
Starting your medical team usually begins with finding a good GP. This leads me to my last, and possibly most important tip…
5. If your GP is not listening to you, find a new one
Your GP is the centre of your health care, and if you don’t have a good one that listens to you and works with you as a team, you need to be strong enough to make the decision to find another doctor better suited to your needs.
My suggestion is to reach out in local community Facebook pages to ask about GPs local to you who have experience with managing complex or chronic health issues. These doctors tend to be a bit more empathetic and understanding, with more experience and knowledge of treatment options and referral possibilities. You need a doctor who, like you, will take a proactive approach to your healthcare, not a passive one.
Gold Coast-based Megan Hackwood is a chronic illness and disability advocate, public speaker and former Lions Clubs International Leo of the Year. Megan lives with multiple chronic illnesses and a disability. She is represented by Champion Health Agency.
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Megan Hackwood
Gold Coast-based Megan Hackwood is a chronic illness and disability advocate, public speaker and former Lions Clubs International Leo of the Year. Megan lives with multiple chronic illnesses and a disability. She is represented by Champion Health Agency.