Sometimes it's OK to Fire Your Doctor

This is not a how to post, I'm writing to let you know that you are not alone. One of the most common complaints you hear in the chronic illness community is over bad doctor appointments. Now, I'm not talking about ones where they give you a tough diagnosis, ironically we call these good appointments because we actually got somewhere we can work from. I'm talking about the appointments where your condition is misunderstood, your symptoms are brushed off, and you leave feeling hopeless and helpless. Those are bad doctor appointments and, sadly, I've had two of them recently.

 The first one, a neuro PT appointment actually, was with one negative type of medical provider. This one thought they knew everything there was to know about Ehlers-Danlos Syndrome (EDS). While at first this seems better than those tropy doctors that have to pull out their phone and Google it, in reality it can be much more dangerous. You see, this provider had seen a couple, meaning 2, patients with EDS. EDS presents differently for everyone so his experience with these two people likely had no correlation to my presentation at all, and that's assuming he treated them properly, which is unlikely. Why do I say this? Well, his reaction me to telling him I had EDS was to tell me he was going to make a body builder out of me and get me weightlifting. Granted, I'm not a medical professional, but I have now seen, met and interacted with HUNDREDS of people with EDS. I assure you, NONE of them were body builders. Weightlifting is typically contraindicated for our condition because the connective tissues at our joints (think shoulders, wrists, knees, etc.) is very weak. This means that lifting heavy things, or even light things sometimes, can cause tears or dislocations. Thankfully, I had the presence of mind (thank You, Jesus!) to look him dead in the eye and tell him that wasn't going to work for me.

 Next, he ascertained that the best way to help me with my balance/dizziness/vertigo issues (the main reason I was there) was to speed up my movement as a whole. His theory was that, because I move slower than average, I'm less likely to be able to catch myself if I fall because my reflexes will be slow as well. I think his theory in itself was inherently flawed as my reflexes seem to be pretty fast - I catch things easily if I drop them, etc. Secondly, I have spent the last four years intentionally slowing down my movements to help AVOID injury. When I move too quickly, I am far more likely to step on my ankle wrong, bump into something, or throw something out. 

 My husband heard my concerns, but wanted other opinions from my providers, which had good timing as I was scheduled to see my doctor and physical therapist that week as well. As I expected, with both of them their jaw dropped when they heard my story, and they echoed my instinct that I should definitely not see him as a provider. I called and cancelled 

 The other provider I saw was a Neurologist. I was looking for a new one that was in the same medical system as my Tumor clinic and Neurosurgeon to better facilitate communication. I had seen my previous one twice and while I didn't have any particular issues with him, I hadn't found him to be helpful or accessible either, so when my Neuro Radio Oncologist suggested that I see a neurologist regarding some of my symptoms I asked her for a recommendation. When I had attempted to see a neurologist in this medical system before it was a 3-6 month wait before you could make an appointment 6-9 months out, so I was looking at a year-long wait! This time, they found me an appointment within a month. In hindsight, I wonder if this appointment opened up because the provider was so bad 😕. I guess there's a chance he's a good neurologist, but I had a hard time seeing it. I'm reasonably sure that he had no idea what more than one of the things I discussed with him was (including EDS and proprioception) based on how he responded, but he was neither bold enough to Google it nor humble enough to ask about it. He just acted like he knew when, based on his responses, it was pretty clear he didn't. 

 His answer for my headache issues was thinking that the Headache Clinic I had seen earlier should have solved them. The Headache Clinic was a joke. I saw my "provider" once for 10-15 minutes virtually where she fire-hosed a PowerPoint presentation at me so fast I couldn't even read the slides, then she handed me off to her assistant. I saw the assistant twice more, but it took months, like six or more, to even get a virtual appointment with the assistant. They would start me on meds to try which wouldn't work out after a couple of weeks and then I'd have to wait 5 1/2 months to figure out the next steps. They were adamant that I not use over-the-counter medication for my migraines (like Ibuprofen or Excedrin) because they can cause rebound headaches. That makes sense, but they didn't have any alternatives for me that worked. So, with the risk of causing a rebound headache in one hand and allowing my migraine to spiral and last potentially months (I've had that happen multiple times), I risk the rebound headache. This new neurologist wasn't any more helpful. He suggested I try a new medication, which after I looked it up is primarily used as an antidepressant. Yes, it is occasionally prescribed as a migraine (one of the MANY sites I looked it up on mentioned that), but I can't help but feel like I've had yet another doctor tell me I was just depressed and I should take something for that 😡. In addition, it has clear MAJOR interactions with several of the other things I told him I take. We're talking "This interaction could result in very serious and potentially life-threatening consequences." So, guess what prescription I will NOT be filling.

 So, the medication issues aside, my biggest problem with this second doctor was that he wanted to come across as all-knowing when it was clear he wasn't. He didn't seem at all interested in partnering with me in my healthcare or acknowledging in any way that I might know a little something about my body and my condition. In fact, when I tried to describe to him the memory issues I've been having, he asked, "Who believes you have memory issues?" and when I told him both my husband and I had seen and were concerned about it, he immediately dismissed it. I shared specific concerns and instances, but he was unimpressed. If a medical doctor had not witnessed and diagnosed me with memory issues, he wasn't going to hear it. And my doctor doesn't count because she's a naturopath. He made it very clear he didn't have any respect for her input at all!

 Oh, and get this, when we spoke about my blood sugar issues, he pulled up my labs on his computer. He was going over them and saying that he was unconcerned because of the numbers. I asked if they were the recent labs from this week thinking that those might not be in the system and he could be looking at labs a year or two old, but still post-brain surgery when I started having issues. No! He looked at the date and the labs he was looking at were from 2003! They were 22 years old! That didn't slow him down though! He still felt confident in his assertions that I was fine BASED ON 22 YEAR OLD LABS! 

 So what's the takeaway here? You know your body better than anyone else, regardless of what kind of degree they hold. We go to doctors to help us diagnose and treat issues, but we know there's an issue, that's why we go there! The ideal patient-doctor relationship is a partnership where you listen to each other. If you have the time, money, and tenacity, hold out for a good doctor. There's absolutely nothing wrong with firing a bad doctor! That said, sometimes we don't have the time-money-tenacity combo and we have to settle. I have an EXCELLENT primary care provider that listens to me and works with me. She's not afraid to learn alongside me and try new things. She has wonderful insight and the ability to keep learning and come up with options for me. She is also good at being honest and saying, "This is your best option at this time," even when it's not a great option. 

Here's the Thing: Because I have that piece in place, sometimes I work with less-than ideal specialists who can order tests or medications that my primary doctor cannot. In these situations, though, it is CRITICAL that I remember the dynamics in play and my power and responsibility in the relationship. I do not have to take a medicine because a doctor said so if it is clearly contraindicated for me. I do not have to follow a treatment plan from a physical therapist that recommends things that are unsafe for me.