There is a lot to be said about the relationship and power dynamic between Healthcare Professionals and us patients. My fellow contributors on this blog, Corinna and Renza have already shared their thoughts on this topic. Corinna shared real-life stories about the power imbalance in clinical settings and how it often leads to misdiagnoses and mistreatment of patients, specifically patients of colour. Renza focused on what happens when that power dynamic is taken online and how it can impact our own experience in the diabetes online community. Following up on these articles, I want to share some personal experiences and practical tips from the community on how to stand your ground in the relationship with your HCP.
When we’re talking about HCPs and patients, it does make sense to take a moment and look at the etymological background of the word “patient” - as boring as that may seem. The Latin “patiens” or “patior” mean “the one who suffers” or “bears”, suggesting a deeply passive image of somebody who is ill and suffering in silence, waiting patiently for the doctor to help. That in itself says a lot about the relationship between the two actors in this scenario and it describes the inherent power imbalance: Patients are dependent on the time, effort, knowledge and skills of doctors. It would suggest that the patients themselves have nothing much to contribute here. But I fundamentally disagree with that. Living with diabetes is the best example: We deal with our condition 24/7 and make 180 decisions each day. PWD can’t be passive, they are always in charge of their treatment. Compared to that, our HCPs - as important as they are - only come into play a couple of hours every year. They can provide guidance and support, but we have to do the heavy lifting ourselves. Each and every day.
I want to be very clear when I say that I know the majority of HCPs are doing a stellar job and absolutely have their patients’ best interest at heart. I’ve actually recommended my current practice more times than I can count and am truly grateful for the support they give me. But not all HCPs are good eggs and we need to be able to talk about that. Please also know that I’m aware that I’m speaking from a place of privilege here. Access to healthcare in my home country Germany is stellar and I wish it were similar everywhere on the globe. That said, I think it’s fair to talk about the struggles PWDs face, even in these privileged countries. Although they may pale in comparison, I still believe they’re valid.
Not all HCPs are the same!
When I myself was diagnosed with diabetes, I had just turned 18. One of my first memories was my endocrinologist forbidding me from spending a year abroad in Vietnam after finishing school - something I had been planning for years. I accepted the decision that had been made for me. But in the years that followed, I struggled to accept my diabetes and the impact it had on my life. Although I never felt supported by him, I stuck with my endo. Living in the countryside, I didn’t have many other options. But even when I moved to a large city, I went back to him every now and then. I had never clicked with my new “big city endo” either and I guess I must have just decided to settle at that point. I don’t think I ever considered that there could actually be doctors out there that would serve me any better. Endo appointments were just something I needed to endure in order to get my prescriptions. I know this sounds utterly unfair, but the fact that I’d been seeing countless different HCPs prior to my diagnosis and nobody (but me) ever thought to prick my finger for that tiny droplet of blood that had all the answers surely played a role here. In hindsight, I can’t believe I accepted this level of care and didn’t stand up for myself for so long.
When I was leaving for a semester abroad in Moscow years later, he said “Well.. whether you’ll manage your diabetes any better over there is anybody’s guess”. I said nothing, I just took it. In case you’re wondering: I did not manage my diabetes well over there. But if I had, it certainly wouldn’t have been because of his support. I could name countless other situations that make me want to scream at him (and myself) in retrospect. But I’ll just share the one that finally made me realise I deserved better: Six years after my diagnosis, I asked him about applying for a pump. How cool is it that I considered making that move of my own accord? Well, he was not thrilled. Since I was with a private insurance company back then, this would have meant some paperwork for him. He was less than keen on that, so instead, he offered me two options that would ease the bureaucratic burden for him and thus would grant me his support: a) Abandon my degree and leave university in order to switch to public health insurance or b) get pregnant. This may sound ridiculous, but simply stating that I would consider neither of those options took EVERYTHING from me. I did it and then I decided to never see him again.
I try to be compassionate with my younger self here because back then, I had no idea that better care was possible and that I indeed deserved it. But I found out soon enough: As it turns out, third time’s a charm and the next endocrinologist I sought out changed my life. I didn’t even have that many appointments with him because shortly after, I moved to another city. But he changed my perspective by demonstrating that an endo can in fact be a great source of support and motivation. At that time, I had just dug myself out of a huge diabetes burnout hole and he really understood what that meant. He applauded me for managing to check my blood sugar once a day (!) because he acknowledged that for me, that was HUGE. More than that, he saw me as a person and thought beyond just the current appointment. He noticed my affinity for technology and handed me a flyer (lol) created by #dedoc°. His attentiveness could not have had a bigger impact. Not only did this help me find a sense of community in the diabetes world after years of feeling completely isolated, but it ultimately led to me starting by own blog and business, becoming an advocate, and now even joining the #dedoc° team myself. (Yup, that was some kind of flyer!)
Our own experiences
After 30 trips around the sun and more than 10 of those with diabetes on board, I’ve had a lot of appointments with HCPs and I’ve learned so, so much about myself and about the role I can play in them. Still, I have my ups and downs. Sometimes I feel like I have two “patient personalities”: One is very confident and outspoken and one is incredibly insecure. On some days, I know exactly how to stand my ground and on another day, I say nothing and dwell on what I should have said and only think of the perfect response once I’m in the shower.
I just recently had a very impactful appointment with a new physiotherapist. I was seeing her for entirely different issues, but we ended up talking about some (not diabetes related) nerve issues in my thighs. Two years earlier, I had received a diagnosis along with the treatment options of a) bearing the pain or b) severing the entire nerve at some point in the future if the pain became unbearable. This was one of the things I had just accepted without getting a second opinion - only to find out by pure coincidence that there were in fact other treatment options. I really thought I knew better than that, but it seems we never stop learning.
Earlier this year, I had my routine OBGYN checkup and was taken aback by his rather random advice that I should lose weight. This is something many overweight people face on a regular basis, not just in clinical settings. “Headaches? Stomach cramps? Ingrown nails? Lose some weight and then we’ll talk!” Fat phobia in our society and in the medical community is a huge danger not only to the mental wellbeing, but also the physical health of those who experience it. I consider myself “small fat”, meaning that while I am considered overweight, I still fit society’s beauty standards enough to avoid blatant fat phobia - compared to people in larger bodies than mine. So I was still surprised when he brought up the issue of weight (especially considering the fact that it was a routine checkup and all was well). This was one of my more confident days though, so I was able to challenge him by calmly asking for the medical basis of his remarks. “Is there a medical reason you’re suggesting this?” turned out to be a tough question for him to answer. He repeated his point again and again, but each time I asked “Why?”, he didn’t have a response. In the end, we agreed that my weight and overall health was not his concern but mine and my GPs. I felt triumphant.
My GP and I had exactly one conversation about my weight. She asked me if I feel comfortable and I responded something like “Comfortable enough and I believe diet culture to be dangerous both mentally and physically!”. She agreed and that was that. I know that these conversations and especially the request to get on a scale each time we enter a doctor’s office can be incredibly triggering for many of us. We all have to find our own way around this, but here’s mine: I do get on that scale, but I ask them not to tell me the number. That way, we skip the big discussion, they have the data (which weight is: It’s data, not a measure of our worth) but it’s significantly less triggering for me. It may sound weird at first, but for me it works really well.
Should I decide to re-write this post in a couple of years’ time, there will surely be many more stories to add. Hopefully most of them will be positive! Because we all live and learn and also because the next paragraphs are full of wisdom from the community on this exact topic! I asked my lovely diabuddies on Instagram (www.instagram.com/pepmeup.diabetesblog) for tips and compiled them here with a few of my own experiences:
Practical Tips to Help You Stand Your Ground in the Doctor’s Office
- It’s legitimate to go into an appointment with confidence and the expectation to be treated like an equal. This is not an unrealistic request! You deserve to be given respect and benevolence.
- Come prepared. It’s great to take some notes prior to the appointment. Are there any issues you want to talk about or need support with? Do you have specific questions or requests? What prescriptions do you need? Feel free to take these notes with you and read from them.
- Remember you can take someone (friend, partner, family member) with you. It might feel great to have somebody in the room who has your back.
- If you’re not comfortable with your HCP or with the care they provide you, you can choose to see somebody else. Sometimes it’s worth taking a longer trip or getting creative in order to receive better care. If that is not an option, you can still demand more from your current HCP and expect them to work with you on improving the relationship.
- Be honest and communicate clearly how you feel. You have a right to give constructive feedback.
- If you don’t feel comfortable with an examination or a choice of treatment, you can say no. This is your right.
- You can question the advice you’re being given and challenge it. (“What is the medical reason for this suggestion?”, “Would you give this advice to … e.g. an average sized / weight person?”)
- You can ask for more information (e.g. papers, articles) on issues you’ve talked about if you still have questions or want to learn more.
Thank you to everyone who contributed their recommendations. I hope this will help you and make you feel confident going into your next appointment. You deserve great care and you should know it!