It's an all too familiar situation when you're chronically ill: you show up at a new doctor's appointment desperate for answers, relief, and empathy. We try not to get our hopes up too high because we know what it's like to be let down by doctors time and time again. Whether the doctor just doesn't know how to help you, is apathetic, does the bare minimum in terms of care, or doesn't believe you, it all hurts the same. In the Canadian medical system we wait anywhere from a few months to a few years to see a specialist so if they end up disappointing us, we have no idea how long it'll be until we can see a new specialist. We needed relief, we were desperate for relief, and something in the doctor didn't recognize that so we leave the office in the exact same situation, if not worse.
When I was bedridden I remember coming home, going straight to my room, and bawling at the top of my lungs for hours because a doctor I had placed all my hopes in had no idea how to treat me. It's one thing to admit that you don't know about a condition, it's another to refuse to learn.
Now, after four years of having POTS, I have a knowledgeable team of specialists that I can count on. It took forever to find these doctors and a lot of research by both my mom and myself. The process of finding these doctors was just as frustrating as the process of receiving a proper diagnosis, if not worse. My GP (general practitioner/family doctor) was admittedly in over her head and had no idea what POTS was, what doctors to send me to, or really what to do with me. An internal medicine doctor had diagnosed me with POTS at a one-month hospital stay as he had learned about it at a conference (see, awareness works!). However, because of his very limited information about POTS, I was discharged with no followup care and this put my mom, myself, and my GP in an awful situation. It was through hours and hours of research that my mom and I would find doctors across the city, province, and continent and ask for my GP to refer me to them. Every single knowledgeable doctor I have I have because I found them and asked my GP for a referral to them.
That's frustrating. I am chronically fatigued, I am in excruciating pain, I was bedridden, and not only did I have to deal with the daily stress of that, I had to learn how to educate doctors on my condition and fight for proper treatment. I didn't want to fight, I was tired of fighting. Unfortunately it's the way the medical system works for rare and invisible illnesses.
I don't know what I would have done if I had to navigate this bizarre world without my mom. My mom is a mystery novelist and incredibly intelligent so researching is part of her life. Before any doctor diagnosed me with POTS, my mom woke me up one day to tell me that she figured out what I had and showed me all the articles she had found about POTS. When I was incredibly exhausted and hopeless, my mom fought for my health and she's the reason I'm where I am today. If you have someone in your life who can be your patient advocate and show up to your appointments to fight on your behalf, I really recommend this. I go into more detail below about how she has fought on my behalf.
Once I learned the politics of the medical system and learned how to conduct myself in my appointments I found a huge difference in how doctors responded to me and I began to receive drastically improved care. As this is the top question I receive ("how do I get my doctor to listen?) I thought I'd share what I've learned throughout the years.
1. An educated patient is an empowered patient. When one doctor told me that there's no way I could have POTS since my blood pressure didn't drop drastically when standing up (sometimes it does, sometimes it doesn't) you better believe that doctor looked like a deer in headlights when I was able to quote the exact medical article that explained that in fact, that was not diagnostic criteria for POTS. I then got that exact medical article out of my bag. I now do not go to a new specialist's appointment (or the ER) without medical articles in my bag addressing every issue that they could possibly bring up. Thankfully, I get this from my mom. When I was in the hospital for a month after developing POTS, I came across all the ignorant doctors you could think of. I remember one time where I was dehydrated from vomiting and they refused to give me saline. My mom printed off an article about how saline is beneficial for POTS and put it up on the corkboard in my room and highlighted all the key points.
2. Don't take no for an answer. As an ex-people pleaser, fighting for my health was initially very uncomfortable for me to do. Thankfully, in moments of severe symptoms and pure desperation, the stubbornness came out in me pretty quick. One thing I noticed is that I would go into an appointment with a goal, a "game plan," and at first it seemed like it was working, like we were getting somewhere, but then the doctor would change the subject and I would leave not realizing that I didn't get what I needed. The appointment was long and tiring and I didn't want to beg, I just wanted to go home. After realizing this, I started approaching my appointments differently which I will go into with the next point.
3. Go in with a game plan. In the book "Your Symptoms are real" by Dr. Benjamin Natelson he analyzed the politics involved in the doctor-patient dynamic and explained how "one study reported that, on average, doctors listen to their patients for only eighteen seconds before jumping in and taking over the direction of the conversation." When I read that I realized how that was exactly what was happening with me. I would go into an appointment with a goal, I would explain my situation and goal to the doctor, and they would nod and agree so I thought it was going well. Then before I knew it the doctor had changed the topic of conversation and pushed me out the door.
You have eighteen seconds to convince your doctor of your symptoms and adequate treatment plan. You do not want to be using these eighteen seconds to list off your current medications or specialist names (so I bring a copy of those to every appointment to hand it over). Once my mom and I realized what was happening in each appointment we would come up with a script on the drive to the appointment. We noticed drastically improved openness and treatment from the practitioner with this new approach. This is how it works: I would go in and explain my symptoms to the doctor in which they would come up with a treatment option, I would chime in explaining how I'm not comfortable with that treatment option because of what current research says. Then the doctor would nod, look like they're about to agree with me, but very discreetly make their original plan the only plan. Once this happened, I previously wouldn't notice until I got home or I would feel helpless and unable to convince them otherwise (as that's what previous experiences showed me to be the case). My mom and I had planned that she would've stayed silent throughout the entire appointment except for at this moment where then SHE would take over because I was too tired. She would step in and repeat what I said but in a different way. For some reason, I have received almost every treatment option I fought for since adding this simple trick. For some reason I was able to internally recompose myself while she was talking and get motivated to continue fighting while listening to what she was saying. So if the doctor still didn't listen to my mom, I was motivated to pick up the torch and continue.
4. Try not to take it personally. it's not you, it's them. Seriously. If they're dismissive about your symptoms it's really difficult because not only does it prevent you from receiving proper treatment, but it does damage to your mental health. It's not that the doctors don't believe you, it's that they have been trained to put out the most obvious (and easily-identifiable) fires. They have not been trained to recognize yours. It's a problem with the system, not a problem with you. Even the best doctors have been desensitized, traumatized, and burned out by the system that created them, it's not working for anyone.
5. Learn the politics of the medical system and learn to make them work for you, not against you. When I was experiencing multiple seizures a day while the doctors were dismissing them for anxiety (before my EEG came back showing that, news flash, I was having seizures), my mom tweeted "Fraser Health" (the health care organization for my province) going off on them while also tagging local news stations. Within 15 minutes we had someone from Fraser Health in my room ordering an EEG and giving me a private room. Drastic times call for drastic measures.
I hope this helped! If you have any specific tips that have helped you navigate your appointments, please leave a comment below.