Now before I get a flood of responses about how you need to go to a doctor, take a breath and read all of what I’ve got to say because I’ll be the first one to say that I fully appreciate every one of the doctors on my team and am exceedingly grateful for the invention of patient portals that allow me to message them directly with all my concerns.
Rare Conditions & Doctors
I’m currently blessed with a very knowledgeable team, but I wasn’t that lucky till recently. Many of my past physicians had no clue what was going on with me or, if they did, had no idea how to properly treat it let alone help me manage it. This doesn’t necessarily mean I had terrible doctors, and that is something important to remember. Ehlers-Danlos Syndrome is rare, and it is not often seen or diagnosed. There is some discussion over whether a larger population actually has hEDS and simply remains undiagnosed…but let’s leave that for another time. The issue at hand here, is that when you have a rare problem, your physician may not have had any experience with them since med school. I could easily climb up on my high horse (which in all honestly probably looks more like a drunk miniature unicorn) and expect that they take all the time required to research whatever is going wrong with me or to have all past school knowledge available from their memory on demand. I choose, however, to acknowledge that they’re still only human and relate it to how I could possibly feel and act if I was asked to perform a task of similar context and complexity. I can easily see me being annoyed, frustrated, and possibly even intimidated.
While this in no way excuses the behavior of some who choose to act rashly upon these feelings in such ways as prescribing medicine without researching the condition, patronizing patients, or just flat out lying…all of this is still what I would consider within expected human nature. I don’t have to like it or approve of it. It is, however, in my best interest to accept it rather than hold a physician to super human expectations.
If you’re able, you can use experiences like this to help find a physician that is better suited to your needs. Use your first appointment to assess your doctor just as they are assessing you. But what if you can’t?
Add +1 To Your Researching Still
With the internet, we’ve got the world at our fingertips. While it’s great for social media and pictures of cats, it’s also a beautiful tool for those of us that need to learn more about our own rare conditions. It will never replace the schooling that your doctors have gone through, and I’ll never advocate such a thing, but it can suppliment to help you get the best care you can.
Everyone should be aware of their own health and I could do a whole other article on how we need better health education in a general sense. With rare conditions, awareness is even more important. Your doctor should be a necessary part of your life, but YOU have to live in your body. Doesn’t it just make sense try and learn what rule book its playing by? Ever hear the quote from Norman Vincent Peale “Shoot for the moon. Even if you miss, you’ll land among the stars”? This should be your approach toward learning about your own medical state. Aim to be at the same level and quality as your own doctor when it comes to your condition. Even if you never get there, you’ll be in a better place than standing on the ground just looking up in awe and confusion.
Though one can find quick answers by a search through Google, may I suggest trying Google Scholar as an alternative? The benefit of that option is you get academic articles rather than merely blogs or community boards. These things have their place, if I didn’t think so I wouldn’t bother writing what you’re reading now. The downside is that while they’re often using much easier vocabulary than medical studies, they can often be more personal experience than valid medical knowledge worth relying on. If you need some suggestions on approaching a more academic article, I suggest this one from Sciencemag.org for some tips.
If you feel more comfortable with less sciency sounding, you still want to try to stick to articles that are on reputable publications. Remember that your goal is to learn, not find evidence of what you want to find so be careful when seeing sources like David Avocado Wolfe or Natural News. You want ones with links for further research and annotations instead of ones that use fear mongering tactics that simply warn against “Big Pharma”. Being wary of medications and invasive options is smart, making decisions purely on the fear of the procedure is cutting yourself from a whole avenue of treatment that has great potential. It’s all about looking at all aspects, weighing the pro’s and con’s, and deciding about risk assessment.
This Sounds Suspiciously Like Work
I seem to be a bit odd in the fact that I think the research aspect is exciting and fun. I enjoy listening to hour long lectures and medical studies. When my surgeon first suggested vinegar and water soaks for the pseudomonas infection I was battling, first thing I did was look up medical articles for how to do it properly and evidence of effectiveness. This wasn’t because I didn’t trust my amazing surgeon but because I wanted to be as informed as I could about what I was doing. It ended up being quite useful in the next ER trip when the doctor treating me had never heard of doing such a thing. Being able to discuss it in even broad terms took it from the initial reaction of “OMG you’re one of *those* that use fake medicine” to “Oh, really? And it was an actual medical study? Huh, sounds like you’re on the ball with this then. I might look into that”.
For most, the idea of intense research seems to be more tedious and reminds most people of school papers. My suggestion is try to find it exciting and interesting. Look at anatomy images and see if you can find the exact point of your pain. Read up on new procedures coming out and their success rate. See what other specialists are writing about. Try and learn what exactly is different in your body and how it works. Document your symptoms and see if you can discern a pattern. The more information you have at your disposal, the more likely you’ll be to feel confident that what care you’re being given is the best option for you. It can also be a good feeling when you’re reading over your own documentation and it says something like “fluid in the sinus tarsi” and you know EXACTLY where in the body they’re talking about! It’s a great confidence booster! I’m not saying it can’t be intimidating and scary sometimes to learn the details. I remember some of my lows when reading about how why my joints will never improve no matter what I do…and I ENJOY research! If you need, take a break for a week or so and go back to it when you’ve digested the information. This isn’t homework with a due date, so don’t pressure yourself. Take your time and do it when you can.
Though I’ve had some doctors that seem to get offended if their patient asks about an alternative treatment plan or diagnosis, my experience has been far more positive than negative. They’ve generally appreciated when I was at least modestly educated on my own health. And, when you think about it, it matters more that you feel you’re getting safe treatment than if you’re on best terms with your doctor. You don’t need to be rudely aggressive and intentionally antagonistic of course, but you’ll have more confidence to refuse something you KNOW is harmful if you need to.
The Hardest Part
As easy as all that can appear to some readers, there is a fine line between learning how your body works and working toward your benefit and fighting with your medical team because you just don’t like where your healthcare is right now. Extreme examples are easy to see, but as one gets closer to that line, the harder it is to see.
Going back to my recent infection as an example, I was sent to an Infectious Disease Doctor. His first suggestion was to get the titanium implant out, then do IV therapy, then get the implant back in. My surgeon wanted to try the IV therapy first. They both had very good reasons for each approach and I personally sided with my surgeon. Part of the reason I was on that side was merely that I didn’t want to go through the surgery again. I could have very easily gone in with a defensive attitude and told him what I’m not going to do right off the bat, but they wouldn’t be to my best benefit. Instead, I had a calm, rational conversation about my concerns with each option and we made a group decision WITH my surgeon to go the route the that didn’t jump to surgery. It turns out to have been for the best as tests came back showing the infection was already gone and my body is just being an angry zebra, but it’s the fact we had a conversation about how to best approach it considering all options. This was much better than going in an knowing little about the bacteria behavior or the risks particular to EDS.
I was pleased to be have gotten a doctor that I got along with. If it had been different, I still would have been more comfortable standing by ground and saying why I’m going to do the less invasive option. If I had not educated myself, I would not have been able to share concerns beyond “but I don’t want to do that!” and perhaps the discussion would not have been as productive. There are a lot of hypothetical outcomes, but it all comes down to knowing I did this the best way I possibly could. That while I still rely on them for their suggestion, I could feel confident and made an educated decision for myself for treatment. That I could ask relevant questions about risks and procedures instead of assuming everything they told me was 100% safe.
Not every doctor will be kind and receptive, but you owe it to your future self to do whatever you can to move forward the best way possible at the time. We should all be in this together.
Even if you hit some bumps along the road from treatment options you find out later that weren’t the best for you, you’ll be able to say to yourself that you do made the best choice you knew was available at the time. That’s all any of us can do.
