Strategies for self-advocacy throughout medical care
It is hard to think of many professions that are as respected and often aspired to, as that of a doctor. Why? Maybe it is because they are respected because of the years and money spent educating their minds about the human body. Perhaps because they look good in a white coat, or is that just in Grey’s Anatomy? But it is likely because when the body starts melting down, they are our lifeline figuratively, and for many literally.
Having spent most of my life being in doctor’s care, I can tell you they do not have all the answers. It may come as a shock to anyone that has a deep trust in the western medical system. Regardless of the dependency placed upon them, they are human after all. And although Western medicine can be a real lifeline for critical life or death situations, the NHS does not have the time or resources to help you get to the root of your condition and are also not trained to do so. Their focus is on managing the symptoms rather than restoring full health.
Doctors roles are like that of a firefighter. Firefighters are not called upon to make structural changes to a building. Just like the doctor is not called upon to make you feel your best self.
Will they say they do not have all the answers? 99% of the time, no. They might continue to do more testing (which is fair enough) until they tell you nothing seems to be wrong. But you feel it, you know it, then you doubt it because doctors know best!
Or maybe you have been diagnosed with a condition, and the treatment does not seem to be working and annoyingly has acute or chronic side effects. What happens then? Usually, a change in treatment, to address the side effects or minimise them. This approach is what I would call this firefighting.
Doctors roles are like that of a firefighter. Firefighters are not called upon to make structural changes to a building. Just like the doctor is not called upon to make you feel your best self. They are often the very last option. But many see their advice as gospel and have problems challenging it when it does not sit right intuitively or physically.
It is not the fault of the doctor. They mean well — most of the time. But there is a bigger system at play that has led to western medical care having somewhat of a monopoly on healing, which has caused people to hand their lives and health over to them with no questions.
Now let us be clear. I am not saying to stop seeking out treatment from doctors. And I am assuming you are reading this as visits to the doctors or GP have felt disempowering. Maybe you are being overprescribed a cocktail of drugs. Perhaps they offered surgery to you before they recommend other non-invasive treatments. There are many reasons which could have sparked that flame to start being proactive in your healing journey.
There are many serious illnesses out there that need fire fighting, so this is not to start minimising doctors role. Instead, I assure you it is natural to take the lead in your healing. Making choices instead of handing over responsibility or feeling coerced is how this engagement should be.
The makeup of every human is unique. But despite sharing so many similarities, many factors go into a person’s constitution (makeup). Siblings that live together and eat the same foods, drink the same drinks, play the same games, yet one develops Type 2 Diabetes, and the other does not. In this hypothetical situation, there could be many factors at play. One child might have inherited a metabolic syndrome, being the reason for the T2D.
It is crucial to understand your uniqueness. Doctors provide diagnoses based on symptoms, tests, and how that correlates to the average of what other people have experienced before. Are they 100% right in all cases? Nope! Misdiagnosis is more common than you think. A BMJ study revealed that every year in the US an average of 44% of people had misdiagnosed cancers. That is scary!? Especially if told there is no cancer, but there is.
All that is to say, please accept that your body is not trying to lie to you, sabotage you but is trying to help. That is the first step in learning to trust your intuition. Only by building trust with your body, you can strengthen your connection to it. It can become the shining torch in your healing journey, spotlighting what needs attending to.
Just like advocating for yourself when applying for a job or filling out an insurance claims form where the best possible outcome is required, it is also necessary to back for yourself when it comes to your healthcare. Feeling inferior to the doctor does not heal you. Neither does feeling helpless.
There are so many times throughout my life I wish I had asked more questions about the treatment offered, the blood test results and what a particular diagnosis meant for me long-term. But I usually felt overwhelmed and naively very trusting. But as I became more connected to my body and saw it as an ally, not a foe, I started to stand up for it and be the one calling the shots. It takes some courage and some strategy.
Be prepared to speak with your doctor about any lifestyle shifts or habits you have, positive or negative.
Here are five ways to become an active advocate for your healthcare
Start with self-compassion and connection.
Being unwell is no fun, and if it is long-term, the feelings that arise are often helplessness, victimhood, anger, shame and a lot of pain. No matter what led to you being ill, the first step in advocating for yourself is knowing your worth. Your worth is not dependant on your health status. You are intrinsically deserving of feeling good. Start to activate that inner healer that knows it is possible to feel good again by making this a part of your belief system. Self-compassion is a verb, and to have more empathy make the time to connect with your body and listen to it. It can be difficult if it is in a lot of pain or does not come naturally, but not impossible. Here are some ways to begin connecting with your body:
- Write down ten reasons you love your body. For example, It lets me know when it needs healing. Or, It manages to wake up every morning. Put this list someplace you can see every day. Your phone background or on your dresser are handy spots.
- Body scan meditation. Either use a guided meditation on an app or online or sit still for 10 minutes and connect to your breath. Take deep breaths in for four and out for four. Then starting with your toes, work your way up and around the body towards your head. Notice the feelings and vibrations emanating from different areas within your body. Doing this helps with becoming more aware if anything feels unsettling before even symptoms arise.
- Nourish it. One of the best ways you can advocate for yourself is by feeding it nourishing food that encourages healing. It can be tempting to eat foods that soothe emotions and provide short-term gratification, but ultimately it is not serving inner healing. So a devouring a whole box of miniature chocolates is not the answer. Eating whole foods rather than highly processed foods is self-care.
Now you feel more connected to your body, you will be aware of the subtle or significant shifts that have taken place since your last appointment. Write down anything you noticed. Be prepared to speak with your doctor about any lifestyle shifts or habits you have, positive or negative. Bring a list of medication and supplements you are taking, including any recent dietary changes. Ensure you get tests done (blood, urine, etc) ahead of the appointment, if required. And have a list of questions prepared that may help to clarify any uncertainties about the treatment offered.
Do your research, but do not believe everything you read online
It is not a cue to Google search your symptoms and go down the rabbit hole of doom. It is to say, get a second opinion. And do not feel like you are stabbing your doctor in the back for it. After all, it is your health! Whether it is requesting your GP to refer you to an outpatient clinician. Or seeking holistic doctors and healers in Traditional Chinese Medicine, Ayurveda, Herbalists or a naturopath to see how they would provide treatment. There is a lot of information online, but getting in touch with a reputable healer will be more informative and individualised.
Take notes down and go over them
You might be in the waiting room for what seems like forever, and by the time you see the doctor, you are ready to go through the motions and leave asap. However, I advise you to use this precious time effectively. In the UK, it is about 15-minute time slots you have, so make it count. Ask your questions and take note of the answers. Take along a pen and paper and jot down anything important that might slip your mind, which it usually does. When you get home, go over the notes and then jot down any questions to be addressed in the follow-up appointment scheduled.
Do not downplay your symptoms, and be assertive!
Some people fear being called a ‘hypochondriac’. So they make light of serious situations, like constant pains in the stomach. Or maybe you think that having debilitating menstrual cramps are the norm. Just because they are common does not mean all is well in the body. You have to be clear about how frequent and severe any symptoms are. But also be clear on what type of treatments you are open to. If a prescribed medication has considerable side effects, are you okay to go ahead? Whether you are or not, ask them to provide multiple solutions to the problem to help short-term and long-term. If a solution offered does not feel right to you, it is okay to say you need time to consider it. If you are sure you do not want the recommended treatment, remember you are within your rights to say no. You are also within your rights to change your mind later on. It is your body, after all. You can explain your decision as little or as much as you like.
If you feel like you will not speak up or do not currently have the clarity of mind to do so, ask a friend, partner or another family member to support you at the appointment. Discuss with them your main concerns and share the questions you have so they can make sure to step up in case you are not able to. Remember to introduce the person to the doctor so they can address you both. However, if the doctor requires a moment alone with you, remember the person with you is supporting whether they are in the room or not.
Putting these measures in place is necessary because speaking up and making sure you are treated appropriately and respectfully in the doctors’ office is a matter of life and death.