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Why You Have No Choice but To Self-Advocate to Get the Healthcare You Need

Updated: May 18

Can you identify with this scenario?


Over the past 5-10 years, you have a growing list of things that are bugging you. You recently went to see your doctor to ask about abnormal spotting, but then you remembered your growing list of other symptoms. You mentioned the allergies and itching, and he/she referred you to a dermatologist and allergist (Awesome!), but when your doctor clearly wanted to end the consultation, you hesitantly asked about your abdominal pain and bloating, and he/she quickly wrote up a lab requisition for a stool test and abruptly ended the call. You didn't have a chance to discuss your sleep issues or your weight gain or your heart palpitations or your headaches or...


There was no discussion about whether any of these symptoms might be related, or what might be causing it, or what treatments exist that could deal with the root cause and help you recover, vs just cover up the symptoms.


This is a very typical health care interaction. It has happened to me. It frustrates me that we can't have a conversation about what matters and instead focus on the problem in front of us without thinking strategically about the big picture. It's not the doctors' fault, they just are imposed so many burdensome demands on their time and regulatory barriers (billing codes etc.) that they are unable to care for patients in the way they would like to. Their educational curriculum also doesn't equip them to do so.

  • They don't have the time to spend with you and review thoroughly your medical history and come up with a comprehensive treatment plan and follow-ups.

  • They certainly don't have time to spend outside of your consultation to research your particular condition - they have to rely on their memory and personal experience with all of their patients or what they've recently read or a conference they've attended, or a pharma rep who visited them.

  • They don't have the technological tools (or permissions) to communicate with you in between consultations to follow-up or send you reminders. Heck, they can't even bill for a 1-minute text reminder or a 5-min email response to answer your questions!

  • They aren't connected into a network of all the allied health providers in order to implement the strategies they know could help you but aren't skilled themselves to apply to you.

  • They don't know about a lot of the "natural" and self-care ways to treat your condition such as lifestyle habits or supplements because their sources for where they review "evidence-based medicine" don't generally cover those types of studies and topics. Their knowledge of "evidence" is typically limited to pharmaceutical-sponsored research. Plus, the quality of evidence for nutritional studies, for example, is not the same caliber and type they are accustomed to, i.e. double-blinded randomized clinical trials like you would test a pill, and those studies are not generally funded by large corporate sponsors and so may not get presented in the types of conferences and settings they typically attend for continuing education requirements.

If every doctor's office worked in a multi-disciplinary setting, it might be different. Or, if every doctor's office was equipped with a few patient advocates or navigators or health coaches, it would also work out very differently. But most of them don't. In Ontario for example, even though family health teams were created as a new inter-disciplinary structure of care around 2010, the government capped its number and stopped receiving applications around 2012, so there are only 187 across the entire province. Other disease-focused inter-disciplinary clinics (e.g. concussion and obesity) have to bill you for any specialist who is not a physician or nurse practitioner (e.g. social worker, dietician, psychologist, naturopathic doctor, physical therapist, coach, etc.) and you often need your doctor's referral just to get into the clinic.


So what is a person to do if they have several different symptoms, and/or have a diagnosis but aren't satisfied with their doctor or specialist's approach of managing symptoms for the rest of their life while their condition keeps deteriorating and having no clue how to stop it?

For example, I recently had conversations with about 4 people who all struggle with migraines, and their triggers are all very different from each other, spanning from digestive issues, to antiviral medications, to stress, to menstrual hormonal peaks, or even testosterone supplementation. But if you go see your doctor, they may send you to a neurologist (if you're lucky) or headache specialist, and won't think to send you to a hormone specialist, psychologist/psychiatrist, infectious disease specialist, or a GI specialist, let alone a nutritionist/dietician.


Unless... YOU KNOW TO ASK FOR IT.


There is the key. You have to request something specifically, and in order to do that, you have to know what to ask. But how do you find out what to ask for?


The Million Dollar Question

There are many ways to find out answers to our health questions. The most common one is we ask our friends and acquaintances, or we see a headline or a post on social media that piques our interest. But usually this is not very satisfying or comprehensive as it may only address one component or possible root cause, and obviously the credibility should always be questioned (as far as what could be true for someone should be expected to also be true for you - not that it is not true at all).


Some of us may read books and listen to podcasts by experts on the issue, which is going to be much more comprehensive, and probably more evidence-based, but again, it depends on the author and their credentials but at least you can check their references and endnotes.


Many people do research online and ask Dr. Google, and will come across a wide array of sources of information, a lot of which may be true (for some people), but also which may be questionable. And not to mention that some of what we read may scare us to death about what may be happening to our bodies! (Like when I read about autoimmune diseases being often among women, and people who experienced trauma in their childhood - and I thought for sure I was going to get cancer or develop an autoimmune disorder!)


Doing your own research of scientific journals and medical websites is likely the best method but it may feel overwhelming. It's hard to know where to start and how to organize your search, not to mention that you may not even know what you're looking for. For example, what do you call the thing where your fingers turn numb and white? (BTW it's Raynaud's disease)


Plus how do you know which sources of information to trust? And, how do you even comprehend the information you read around cellular pathways and genes and receptors and enzymes and proteins and other scientific jargon if you don't have a cellular biology or biochemistry degree?


In the next few blogs I'm going to lay out some guidelines to help you conduct your own scientific literature review. The good news is, it is a lot more accessible than you think to find and understand evidence of the root cause of your symptom(s) and of different interventions that may work to address your root cause that your doctor may not know about or have clued in that might work for you (because he/she wasn't listening to you).


See you next time.


Contact me at sarah@rootedskysolutions.com if you want to discuss your health concerns and how I might be able to help you. Visit my Tier 1 Self-Advocacy Toolkit page to find out about how I can help you uncover your root cause and outline new possibilities, quickly and affordably: www.rootedskysolutions.com/tier1toolkit





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