Thought point: on coming out with tickborne illness to healthcare professionals

As I drove to my dental cleaning appointment earlier this week, I thought ahead to the questions that I knew would be coming from the dental hygienist: Any changes to your health? Are you on any medications?

Road

The answer in the past has always been a fairly trivial “no.”

But this time the answer wouldn’t so simple. While I haven’t started any medications for treating tickborne illness yet and could have slid by with my usual answer, the weight of having recently received lab results that indicate I’ve been bitten by a tick has felt fairly significant.

I’m not sure how much the answers to those questions at the beginning of the appointment really matter. Vaguely speaking I know that certain health conditions have bearing on your oral health, presumably influencing how the hygienist assesses the state of your mouth. But I’m keenly aware of the stigma surrounding a lyme disease diagnosis, which led to a sense of hesitation about disclosing my recent health developments. And with doctors specifically, I’m tired of the air of disbelief or lack of genuine concern for my symptoms I’m often met with.

In the end, I decided to hell with my anxiety and to be upfront about things.

I outlined the health difficulties I’ve been struggling with the past few years. The misdiagnoses. The eventual trips to the United States to the Open Medicine Institute. The recent lab results.

When the mention of lyme came up, I think she was a bit taken aback at first; later though, she sprinkled the rest of the appointment with some questions about it.

And guess what? It really wasn’t a big deal to “come out”, the way my anxious mind had been making it out in my head.

In fact, it was the perfect opportunity to educate someone in the medical field about what it’s like to be bitten by a tick in this currently oblivious health climate. To her credit, she was very curious and open-minded about my experience. I think as much as it benefited her to learn something new, it also benefited me to feel like I did something (albeit small) to bring awareness to tickborne illness.

Some final thoughts:

  1. Depending on which circles you’re in, discussing chronic tickborne illness to others will likely be met with at least some level of skepticism. But to break the stigma surrounding it, we need to start having conversations about the reality of being bitten by a tick. Taking the opportunity to mention it to those involved in your medical care in “secondary” waysfor example, your dentist, dental hygienist, optometrist, phlebotomistis a great place to start, since these people are already interested in health but (hopefully) haven’t developed a bias against believing in chronic tickborne illness the way that unfortunately your General Practitioner may have.
  2. Sharing your experience with others might lead to some unexpected insights. The person you’re talking with might be able to relate to your experience in some capacitymaybe they know someone who’s also been dealing with tickborne illness and found relief with xyz treatment. In my case, it was interesting enough just to hear that my hygienist had been bitten by a tick in her youth but thankfully not by the strain that carries any notable bacteria.
  3. It can be wearying to talk about your health to others. You’re tired of complaining about your symptoms. Some people act like they just don’t care, or they try to discredit the legitimacy of what you’re saying. I get it. But on the flipside, it’s very satisfying when you come across someone who is willing to listen to you and whose level of awareness you can increase.

I’m not saying that I always expect to feel great after talking about my medical issues, but this past trip to the dentist was certainly an encouraging experience that, going forward, makes me less inclined to default to hiding my experiences with tickborne illness.

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8 responses to “Thought point: on coming out with tickborne illness to healthcare professionals

  1. I live in a part of Eastern Canada where ticks are “everywhere”! Lyme disease is starting to be taken more seriously, several of my friends have been treated for bites – and some of them are struggling with their aftermath. I hope your recovery and healing process is going well.

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    • Thanks so much for your kind words. It’s really crazy how pervasive Lyme disease is becoming; I’m glad that at least the medical establishment is starting to recognize it, albeit far too slowly. I hope you never have a brush with an infected tick yourself!

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  2. As a bisexual who is also in remission from Lyme disease, your use of the phrase “coming out” with Lyme really made me smile. It’s accurate. Talking about your lyme disease can feel like a similar experience; having to reveal something deeply personal and emotionally loaded about yourself to someone who might judge you harshly. Additionally it’s something you can’t really see from the outside, so people might not believe you, or they think that they get to ultimately decide whether or not your illness is valid. Also, even though it can be emotionally exhausting to talk about your Lyme disease and make you feel like a walking PSA, sharing your experience might help someone else recognize similar symptoms in themselves or a loved one and get some help.

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    • Thank you for sharing your point of view! I agree with what you said as I think we have both been in a similar boat with the Lyme disease. My hope is that by sharing my thoughts as blogposts, and encouraging others to do the same with whatever they’re going through, little by little more people will come to understand the various challenges that many face on a day-to-day basis. If you don’t mind me asking, what sort of treatment protocol put your Lyme into remission?

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      • Well I had very severe late stage neugological lyme. I’m pretty sure I had it for at least ten years before I got a diagnosis. I did treatment for about two and a half years. I did a whole bunch of different treatment protocols, abx, URLx, Herbals, Diet, the whole nine yards. What ended up working for me was a very strange holistic “energies” treatment that I did with a chiropractor. I will probably try to do a post about it in the future, once I get this blog more put together, because I just started it. But it’s been a crazy experience. I did not think the holistic, alternative medicine was going to work at all, but I was pretty much out of options, and weirdly it did end up working, far better than anything else. And now, about a year later I am in remission! Have you had any luck with treatment so far? I know people respond differently to different things.

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      • Thank you for the synopsis of what you went through and what eventually worked! I haven’t heard anything about that sort of treatment and would encourage you, if it’s not too painful, to write about what worked for you and didn’t. Right now we seem to have landed on me having an autoimmune inflammatory type illness (kind of like PANS/PANDAS if you’ve heard of that) that started by being infected with a tick 3 years ago when I got sick with the “flu”. I just took a 3 month course of antibiotics and have changed my diet to mostly paleo, and I *seem* to be steadily improving but it’s hard to say if it’s just one of those random fluctuations. Time will tell, but right now I’m just thankful to be slowly getting my brain back. My memory, verbal fluency, ability to think through how to respond to everyday situations, and all that fun stuff were atrocious in the past.

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  3. I’ve always been so terrified of ticks, ever since I was a kid and first heard about it. The thought of a tick borne illness scares the living daylights out of me. Thank you for being brave enough to share about your experience, both on your blog and with those in the medical field. It can take a lot of courage to do both. I have endometriosis and have been met with the same attitude my health practitioners and it can be so disheartening. I hope you’re doing well today! Sending lots of good thoughts your way.

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    • I grew up in an area where the thought of catching something from a tick would hardly cross anyone’s minds, as something like Lyme isn’t considered possible to catch here in Alberta, Canada. While I don’t know where I caught my illness (could’ve been while traveling), I do know that it in fact exists in this province. So I must admit, after being infected with this bacteria, going anywhere into nature makes me a little afraid too. At the same time I still want to live life… but just while being more vigilant (eg. checking exposed skin once I come inside). Knowing what to look for and taking any tick attachments seriously is all you can really do.
      On sharing with others – their reactions are shaped so much by their individual experiences. I guess one way to look at it could be to choose to be happy for the other person (if we’re met by lack of understanding or empathy), as they likely haven’t been touched with the type of struggle we’re sharing with them. Haha, that’s just something I thought up right now that maybe I’ll try next time I’m in a disheartening situation. Anyway, always nice to hear from you and I hope you’re having a fabulous weekend 🙂

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