This one is all about how to navigate the challenging task of talking to our doctors. For those of us with chronic health issues, this is frequent, tiring, can often be demoralizing, and just generally difficult. Few of us are fortunate enough to be able to say that all our medical interactions have been positive, especially if we are members of marginalized groups or women; it’s a thing. Medical gaslighting is a term that gets thrown around a lot in various chronic illness forums that I follow. And I want to be clear: nothing in this post is to suggest that those experiences are actual medical gaslighting, or not valid, or not justified in the anger and frustration expressed therein.

I think that there’s a disconnect between doctors and patients and, don’t get me wrong in all fields there are frankly just some bad actors, including in the realm of doctors. But the relationship between doctors and patients has really been a difficult one throughout history. Our information age in some ways is even made it more difficult, especially for those navigating chronic illness who are just trying to get as much of our lives back as we can. So, this post is about trying to bridge that gap, offering doctors the information that will help them navigate their tough job the easiest, while still being true to ourselves and our difficult lived experiences as patients.

This is something I’ve been thinking about as I deal with my own chronic illness and diagnosis journey, and my university study towards research interests. I love science and always have, but it’s not without its weaknesses, flaws, and blind spots. In science, there is a hierarchy of evidence that is generally acknowledged by those who use it. And in its simplest division it can be broken down into subjective and objective evidence. In many ways, I believe this is the foundation of the communication wall between the doctor and the patient that makes discussing our health and watching their process so difficult for so many people.

First, let’s talk about subjective evidence and what that is exactly. When we go to our doctor’s office and we say, “I’ve been so tired, I can hardly do anything! Everything I do feels like I’m running a marathon, and if I push myself too hard, I am in so much pain the next day. What’s wrong with me?” But the doctor goes, “Well that sounds like fatigue.” A really educated doctor might even say that could be post exertional malaise as well, but that would require a doctor with more awareness of ME/CFS, or POTS, or fibromyalgia and how those play out for people (or even believing these conditions exist). So, fatigue is a subjective symptom with a subjective explanation; unfortunately, based on how science is developed around medicine, this is not very helpful to your doctor. Especially fatigue which is attached to so many conditions from cancer to the common cold, so it really doesn’t help nail anything down for a doctor. Subjective evidence is our lived experience, often communicated through narrative, and it tends to be more emotional in how it’s conveyed.

Qualitative researchers are great at working with this kind of data; they have methods that have been developed to tease out information that presents more objectively so that scientific methods and statistics can be applied to it. I am a firm believer that anything to do with the human experience, such a psychology and healthcare, needs to respect and acknowledge qualitative data (I might be a minority in that statement even while most people outside of science would probably agree with me there, but that’s a story for another day!). Quantitative data and objective evidence are things that can be broken down into numbers. They are commonly considered “factual information” attached to dates and times, as well as measured intensity levels that can be observed across time and in relation to other events. I will note here, though, that no information is perfectly objective. It’s always reduced by observer effects as much as we try our best to get as close as we reasonably can.

Let’s go back to our fatigue example and imagine that this person, despite their fatigue and acknowledging the added difficulty of incorporating this, that they journaled every day (aka symptom tracking). Imagine they noted intensity of the fatigue daily across the past three months, including a measure of how busy those days were, how stressful their days were, and physical activity levels. This person just turned that subjective lived experience into objective evidence for their doctor, which now makes that doctor’s job just a little bit easier. It also makes it a bit harder for them to dismiss you, not to say there won’t still be the occasional one that will.

Now that doctor can ask deeper questions to get at the root of that fatigue and what might be causing it:

• Do you notice any patterns with your physical activity or your stress levels and your fatigue levels?
• Does anything seem to help or make it worse?
• Do you know when it’s started?

This allows you and your doctor to look for something called correlations, which I will scream through a megaphone as many times as necessary: does NOT necessarily mean causation. Correlations are things that seem to be happening together in time and space, which makes it easy to imagine thing A causing thing B. There is this whole explanation I could get into about why that’s not necessarily the case… The third variable problem, reverse causality, all sorts of things that can make this just not work… For now, just take my word for it. Correlation is not causation. It can hint at it as a possibility though, with enough evidence.

So, journaling, symptom tracking, nutrition tracking, any kind of tracking that turns those finer details of lived experience into more objective data. That also includes clearly defining those details, such as what you mean by “a busy day.” If you go to your doctor and instead, say, “Over the past three months, I’ve really noticed I’ve been getting more and more tired. It seems to be gradually getting worse. If I have a busy day, it really seems to make it hit me harder and I need a few days to recover. What I mean by a busy day, for example, is if I did a load of laundry, wash the dishes after supper, took my kids to the park, and attended a PTA meeting. This wasn’t a problem before.” Those details matter because now you’ve given your doctor symptoms, timing, progression, and some activities of daily living which are impacted.

Before a doctor’s appointment or a phone call, sitting down and writing some things out or role-playing with a friend or loved one, how you’re going to give this information to your doctor can be helpful. This can clear your mind and organize your thoughts, and maybe even lead to noticing some important details you otherwise hadn’t noticed until trying to put it together that way. For tracking, there’s tons of options out there from apps to journals. Many of those apps are even free, or any coil notebook could do (throw some of your favourites down into the chat to share with others here!) I know that the Visible app, which is designed for people with chronic illness, does have free options for symptom tracking. My personal ones that I keep going back to are My Net Diary and the Nickel Navigator app (general nutrition, and nickel load tracking respectively). I also have this cute, weird little app meant for menstrual tracking called My Calendar, but it has some really great features for symptom tracking as well. While these all have paid tiers as well, the free versions are amazing. They do have paid add-ons if you wanted them, but I have been satisfied with the free versions without issue. My daughter was really into Pokémon Sleep for a while, which is also free and quirky (sleep tracking). Such apps, if you’re going to use them, they’re very personal; finding ones that work for you and your needs, preferences, and interests is key to actually using them rather than losing interest after a few days.

This practice can be helpful in seeing patterns or connections that you may have missed, which can offer important clues. It can also promote questions that can be thrown into an AI bot (I suggest encouraging it to connect to pages like Google Scholar, Pub Med, or academic journals relating to the specialty you are asking about for higher quality information (e.g. cardiology or neuroscience). AI has a lot of potential to be helpful in medicine because it is capable of holding all that information and wading through it. Important note though: information, health information from AI especially, should always be filtered through a doctor, pharmacist, or associated professional in the field to ensure clarity and prevent AI hallucinations from causing harm. The way we word our questions is everything, and sometimes the way an uneducated individual may phrase their experience isn’t necessarily going to line up with what might crack out of the Gears of an AI algorithm.

Back to doctors though, I firmly believe people don’t become doctors just to satisfy some egoic trip. Maybe there’s a few who trickle through on that, but I think the vast majority are genuinely caring individuals. As someone myself who has spent my entire life learning about health and how the mind and the body work via a different stream, it truly is a commitment not to be taken lightly. I cannot see doctors, who give that much of themselves to that education, as people who just don’t care. The systems and strains of working within it may wear them down, but I believe it is helpful to go in with that belief to give them the benefit of the doubt and remember they are only human too. I think their scientific training and the way it promotes a style of communication as inhibits their capacity to bridge the gap between their knowledge and their patient’s lived experiences.

With those details in mind, it’s probably something of a relief for them when normal labs come back, even while those normal labs are a bit of a slap in the face for the lived experience of someone with chronic illness who’s just desperately trying to figure out what’s happening to them. This creates another disconnect between the chronic illness warrior and the healthcare providers who are there to help them. I believe it’s an important thing to acknowledge in that space whenever this happens.

Going back to the scientist mindset yourself keeps your doctor on course. “That’s great news, doctor, but what comes next?” If I try to think back to what I said recently with my last normal test, it was something along the lines of, “Well, that’s great news doctor, but I still don’t know what’s happening to me. What should we look at next? My doctor asked me to share the research papers I was looking at in our last appointment, which was just so validating. I feel very fortunate to have my family doctor because through this she really has been wonderfully empathetic and keeps trying with me and for me (not to mention just how lucky I am to have a family doctor at all right now here in Nova Scotia where thousands have been without for years). I know this is not everyone’s experience though, but I feel like it’s kind of nice to hear those doctors are out there for a little hope.

For those doctors that are incredibly dismissive or difficult to deal with though, I truly wish I had better advice than just to focus on working within objective data with them. There are many who choose to just not believe in certain medical conditions (often those which chronically afflict women, naturally), such as POTS or ME/CFS. Here I wish to highlight that your difficulty with doctors is not your fault! There is a mountain of system difficulties in research and health provider education, as well as coding limitations in insurance systems and limited access. Add in biases against women and visible minorities influencing the foundations of medical research and education (both of which require the scaffolding of historical findings to obtain funding and approval for current activities), and it is a mess out there. So much of it is luck, and it shouldn’t be. If you do have a negative experience with your doctor, request everything be documented (especially refusal of care or testing), and never be afraid to get your medical records and take them somewhere else for a second opinion. Finding doctors who are knowledgeable about your condition is the most powerful thing you can do for yourself, if possible.

None of this extra work is fair or kind to ask of disabled people, or those facing the fear of a change in their health status. Give yourself grace and the occasional break while advocating your way through your care. Anyone who says chronic illness isn’t a battle hasn’t had to fight for care, so be proud of what you can do and gentle on yourself when you need to step back. One day at a time is the only way forward.

I am not a medical doctor, or registered psychologist. As such, the information and practices shared here are for educational and inspirational purposes only and are not intended to diagnose, treat, cure, or prevent any condition. Please consult your doctor or qualified healthcare professional before making any changes to your health, lifestyle, or treatment plan.

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