Finding your “soul mate” doctor is remarkably similar to dating. I mean it! The end goal is to find someone that you can trust with a very vulnerable part of yourself, to believe that what they say is genuinely how they feel and is also true. Let’s explore some of the similarities:
- The first date is always awkward: “What should I wear?” On a date, you second-guess “Does this make me look bloated?”. When visiting your new doctor, you wonder “Do I look good enough that my new doctor will think I care about this appointment, but not so good that I look healthy?” … Second-guessing. Back and forth. It’s normal. Whether you’re going on a date, or visiting a new doctor, it’s awkward. When you finally get to the restaurant / doctor’s office, you try to share helpful things about yourself, all the while checking out if they’re a compatible fit and if they’ve got the credentials you’re looking for. The end is also important. “Was there a spark?” If not, there’s no second date.
- Good dates require planning: In a dating relationship, whoever asks for the date should choose a time, and come up with a flexible plan for dinner and entertainment. In our doctor scenario, since you’re asking for the appointment, it’s your responsibility to come with a game plan – 1) being ready with your medical history and health journal, and 2) having questions / goals in mind, so you can make the most out of your appointment. This shows that you’re invested.
- A gentleman always pays: Well unfortunately, your doctor will never pay… But oh boy, you will! Sorry, I guess this is one where the metaphor deviates.
- You may be motivated to start exercising again: Unlike dating where you may start exercising in order to be more attractive to your date… Exercising when you’re “dating” your doctor is more about peer pressure and guilt… Though I suppose it is “good peer-pressure”.
- Communication is key: If you leave out essential details, if you’re not paying attention to the most important parts of what is happening in your body… your doctor can’t learn enough information to truly help you. Keep thinking of things you want to share, and listen attentively as they share their thoughts.
- Your date can’t read your mind: As much as we would wish, the person you’re dating can’t read your mind. If you want something from your date, it’s up to you to tell them. The same goes for your doctor. If you’re upset, if you feel confused, if you feel like they’re not on the same page as you… you gotta tell them.
- You’re not always going to like what your date has to say: If you’re dating a guy / girl with real integrity, their honesty may sometimes hurt. But, would you really want someone who lets you have a booger hanging out of your nose all night? Likewise, your doctor will tell you things that you’re doing incorrectly. As long as it is honest, reasonable advice… let’s just agree that we can be thankful for people who are willing to be honest.
- They dream about the future with you: Okay, it would be creepy if your doctor “dreamed” about your shared future… But, they should be actively planning how to get you better – and not just actively – but “thoughtfully”. They should reasonably consider your treatment plan, and it should be a medical plan that both of you are excited about and feel confident in.
- You can be yourself with them: You should be able to speak plainly with your doctor without worrying that they think you’re crazy. If you can’t be honest with your doctor about your goals and your grievances, then that’s not a good sign. Now is the time to decide if the problem is with you or if it’s with them.
- They help you be the best “you” possible: Good relationships make the people in them bloom into a better version of themselves – more loving, more kind, joyful… At some point in the relationship, you have to decide if your doctor is ultimately helping you become better. Now, you may be more sick than when you started, but do you feel confident nonetheless that your doctor is helping you?
- The breakup stage: After giving it some serious thought, if you can’t be honest with your doctor, if you don’t feel heard, or simply if you no longer feel confident that they’re helping your health journey, then it’s time for a break-up.
- There are “plenty of fish in the sea” stage: Seriously, google it… So many fish (doctors). You can read reviews of doctors online. You can ask your friends and loved ones. You can ask other Lymies near you! But don’t give up. Fight on. Start over again… You’ll find “The ONE”.
- You found “The One!”: Congratulations! You’ve found the doctor whom you can be yourself with, who communicates with you and you with them, who listens to you, who thoughtfully considers your future. May you have a happy and healthy life together! (P.S. I’m throwing imaginary confetti at you!)
So, as you can see… lots of similarities. I wish you lots of hope and favor as you look for “The One.”
Lyme Disease has the very unfortunate side effect of “brain fog”—a growing state of confusion, not thinking clearly, difficulty remembering things, etc. Brain fog makes getting the most out of your doctor’s appointments tricky.
This is one area of my life where my “Type A” personality has been a real help. If that’s not you, may I humbly suggest that now is the time to learn to be “Type A-ish” with your doctor’s appointments? You may develop your own system that works wonder for you, and if it’s different than mine – fabulous! But, here is what I do, and it seems to work really well:
- I keep a medical journal between doctor appointments (I like typing mine on the computer so that I can make a copy for me and one to give to my doctor). I record weekly my overall symptoms and rate them based upon frequency and severity. By keeping this kind of log, I’m better able to see patterns and less likely to forget the major things that I need to mention to my doctor. (PS Due to brain fog, I highly suggest having a pre-set time on your calendar to do this, so you don’t forget!)
- I keep an ongoing list of all my medication (again on the computer—copying and pasting is my friend). I also make sure to carry a copy of this in my purse or on my phone with me at all times. Sadly, you never know when you’ll have unexpected trip to the ER and be asked to recall the 25 different medications you’re on.
- The week before a doctor’s appointment, I start talking with my husband about medical questions or patterns I’m thinking through, and ask him to be thinking as well. Even if he doesn’t have any thoughts, I think it’s helpful for both of us, as it reminds us that we’re a team in making these decisions.
- The day before a doctor’s appointment, I print my weekly medical journals, as well as my medication list (x2 – your doctor might ask to keep a copy!). I then proceed to make a short “review” (see picture below), that helps me collect all my thoughts. I write down the things that I feel like are doing overall better, the things that are overall doing worse, and then I have a section for questions that I intend on asking. When, I’m all done, I show my husband and say, “This is what I’m planning on talking about with Dr. ____ tomorrow. What do you think? Are there any questions you have that I missed?” And then I adjust if he has any thoughts. And… print
- The day of the appointment, I always ask someone to go with me. Having a friend or loved one along can be really helpful, especially if they’re willing to drive. It allows you to talk on the one way to the appointment and review the things that are really important to you without having to pay attention to the road. I use this time to tell my friend or loved one my goals for the meeting, and ask them to help me make sure I complete them. Again—brain fog is awful. You might get confused in your appointment or even with your detailed notes forget to say something. This is when your loved one gets to chime in because you’ve already given them the “green light” to help make the appointment better. Additionally, you can ask them to take notes, so that you can spend more time talking directly to your doctor without having to also think about scribbling quickly. Use the assets you have! And can I just say – why do something alone when you can do it together?
I hope this gives you some ideas on how to prepare. If you find a prep technique that really works for you, I’d love to invite you to share it in the comments section. We’ll all help each other get better at this.
Blessings and health to you!
I alluded to the process of finding a doctor who can treat your Lyme in my post “so you think you have lyme disease”, but I think that it’s worth expanding the discussion.
I realize that everyone must go through their own process of coming to terms with their disease, and even being ready for treatment. By the time I was diagnosed, I had been sick long enough to be desperate to get started. I, like many others before you, have had the experience of being turned away by doctors or finding doctors who want to help but who ultimately don’t have the expertise. I tried six doctors before ultimately deciding that it was worth it to find (and pay out-of-pocket for) a Lyme Specialist.
Now, what is a Lyme Specialist? A Lyme Specialist is a doctor who treats Lyme Disease and other co-infections. They treat these diseases almost exclusively and have dedicated their lives to finding treatments that work. As I said before, there is no known cure for Chronic Lyme Disease (Lyme Disease that has disseminated in your body for more than 4-6 weeks), therefore all treatment is considered experimental. Though it is “experimental”, Lyme Specialists are on the cutting edge of research and have the best chances of helping you.
Now, be prepared that because insurance companies sanction doctors who do experimental Lyme treatment, your doctor’s appointments will most likely not be covered by insurance and you will have to pay out-of-pocket. That’s intimidating, I know. It is the only reason that I waited so long to go to one. But please… May I save you a big headache and suggest you skip right to a Lyme Specialist? Here’s why:
- A Lyme Specialist will take you seriously. With each of the doctors I tried before my Lyme doctor, I always felt like I had to convince them, “No, really… I’m sick. I promise.” Frankly, many doctors aren’t up on the current research and discussions about Lyme Disease. Many think it’s a fad to be sick with Lyme, so you end up spending the appointment trying to convince them that you need help. This is not the doctor for you.
- A Lyme Specialist will actually know what to do with you. It’s sad, but there is a lot of misinformation about Lyme Disease, and I’ve met many doctors who are unaware that Lyme is in their area, as well as misinformed about basic diagnosis and treatment. There are so many diseases out there, and doctors are trying to do the best with what they know… but they can’t know everything. That is why we need to rely upon the people who really know the disease that you have. You wouldn’t go to your family doctor for your cancer treatment. You’d go to an oncologist. If you have Lyme Disease, you’ll be in the best hands with a Lyme Specialist. They’ll know the tests to run, and they’ll have an actual treatment plan. These doctors have successfully helped many of their patients regain their livelihood.
- A Lyme Specialist will say “yes” to treating you. What do I mean by that? As I’ve said before, since there is no cure for Chronic Lyme Disease, all treatment is considered “experimental”. That means that insurance companies will sanction doctors who treat it. So, even if you can find a beloved family doctor or infectious disease specialist who wants to help you (and that your insurance plan covers), they probably can’t without getting in trouble. They will want to help, but most likely can’t without jeopardizing the rest of their medical practice. A Lyme Specialist, however, has willingly alienated themselves from the medical and insurance community to treat people like you. So, you can be assured that when you call them, they will treat you… because they’ve devoted their whole practice to this.
- There’s no time to waste. The longer Lyme Disease (and those nasty co-infections) runs rampant in your body, the harder it is to treat. It took me six months and six failed experiences with doctors to come to the conclusion that I would go to a non-insurance covered specialist. I wish I had sooner!
- It’s costly, but your life is worth it. Going to a Lyme specialist and trying experimental treatment is scary… mostly because of the financial aspects (at least to me!). However, it’s an investment in your future. It’s an investment in your family. It’s the most important investment of your life—for you and for the people around you. It’s worth it for your sake and for your family’s sake to have your life back. It’s not selfish to spend money to get better. It’s a wise choice.
You may have guessed it already — Lyme Specialists are often seen as pariahs in the medical community. They are either celebrated wholeheartedly or banished. For that reason, many Lyme doctors do not have a strong internet presence, and it is hard to find them. The International Lyme and Associated Diseases Society (ILADS) is a reputable organization, and they can help you find a physician in your area. Go to this page for a physician referral.
Next, I’ll be posting about how to get the most out of your doctor’s appointment. Please comment below with any questions or helpful tips for other Lymies.
A little “Doctor Who” humor for you. Get it? Because the post is about “finding the right doctor”… My favorite doctor was Matt Smith!