The Headlines May As Well Read: Don’t Go Outside All Summer.
In Response to the Tick-Borne Illness Media Frenzy of the Summer of 2017.
A doctor told me he told his daughter to stop going hiking because she could get bit by a tick. I also heard from another doctor here in California that Lyme Disease isn’t a problem on the West Coast. That the ticks here don’t carry the disease so it’s impossible for Californians to get the disease while here. It’s miscommunication, lack of education, and fear creating this media frenzy unfortunately, not the actual disease itself.
Powassan Virus has become the “it” virus of the season, trending alongside Millennial Pink, Kylie Lip Kits, and Crossfit training. Ticks are now something to be afraid of, overtaking people’s minds in the summer months with a looming sense of fear. The headlines may as well read:
I keep receiving emails from friends warning me that tick-borne illnesses will reach astronomical levels this year. That mice, which are the host to borrelia burgdorferi (the bacteria that causes Lyme Disease) are rapidly multiplying, and ticks (they feed on the mice and act as the vector to human to transmit the disease) have come out of “hiding” earlier than usual(1). Thus, reporters and scientists have concluded that Lyme Disease is now is growing at a more rapid pace than ever, and that it’s something to fear more than ever.
It may be ignorance that drives our society, but I think it’s a lack of desire to learn. It’s the instant gratification of opening a news notification on our cell phones, reading an article and trusting that it will educate you on all matters related to Lyme Disease. It’s watching one episode of Real Housewives of wherever, experiencing a glimpse into Yolanda Hadid’s pain and going on about your life thinking that you hold all the knowledge of tick-borne illnesses. It’s reading the headlines that say things such as “Lyme Disease is Something to Fear, as Ticks are More Active than Ever in 2017” and believing exactly that. That’s where fear extends a hand and many are ready to introduce themselves.
In response to all of the articles being written with the intention to scare the shit out of people, I want to extend a hand to educate people on true facts about ticks and Lyme Disease that I’ve learned over the past eight months since my diagnosis.
1. Even though there are more ticks this year, it doesn’t mean we should panic, just be precautionary in your actions. Wear bug spray when you go on hikes or are in places with a higher concentration of bugs (tea tree oil mixed with water in a spray bottle does the trick and doesn’t smell disgusting). Wear long pants and long sleeves when hiking, and check for ticks when you get home. If you do find one, go to your nearest doctor or urgent care to get it removed, don’t try and remove it yourself and don’t freak out. Ask the doctor to take a blood test for Lyme, and check back in in around two weeks to get a follow up blood test to be thorough. *FACT: not all ticks carry Lyme Disease, and even if the tick does, it doesn’t mean that you will get it!*
2. Lyme Disease can cause a range of symptoms: weakness, pain, fatigue, flu-like symptoms, memory problems, neurological problems, and more. So, when you’re talking about the disease, or talking to someone who has it, if you truly want to know how they’re feeling don’t be afraid to ask more substantial questions. If I dare to mention my illness to someone other than my family and my closest group of friends, I get, “Oh isn’t that what that model has? It sounds terrible.” But, then, I get the same questions you would get if you had Mono: “are you tired? I heard it makes you really tired” to which I reply, “yes, yes I’m tired”.
The truth isn’t that I’m sitting around sleeping all day, or that the disease itself makes me tired, truly I’m tired of trying to explain what I’m going through to people that I probably won’t see again. I want to be an educator, I have a huge desire to make this disease more relevant so that we can find a cure, but it gets exhausting being a patient all of the time. Sometimes people don’t see you as a fellow human, they see you as someone suffering which, I completely understand. It’s hard to know what to do around someone who isn’t feeling well, but the more education we can circulate, the faster we can find a cure to this disease and make the conversation less uncomfortable!
And, if you were wondering, yes, I am physically tired because I am constantly in pain, but exhaustion isn’t all Lyme Disease is, it’s just a part of the symptoms for Lymies.
3. Lyme Disease isn’t worse than ever now, it’s always been bad. It’s always been there. It’s just not on every doctor’s radar, and there is a constant discussion about whether it’s “real” or it doesn’t truly exist and it’s a made-up illness. That, for me, is the most frustrating conversation I’ve had to have throughout my illness, trying to convince people I am truly sick even though I may not look it all the time. I have good days and bad, but the good days aren’t great and the bad days can be horrible.
The discussion of Lyme Disease is becoming more relevant, there is more light being shed on it with Kelly Osbourne and Yolanda Hadid each sharing memoirs of their experiences(2,3). It’s shedding light and bringing publicity to something that many people have been suffering from for a long time.
The door is opening up, finally, and we need to take advantage of it. The truth is, tick-borne illnesses aren’t going to be astronomical this summer, they already are enormous and grow in cases each year, they’re just not something most people are aware of. The CDC reports that 300,000 people each year are diagnosed with Lyme Disease, more than five times the amount of people diagnosed with HIV/AIDS each year, which is around 38,000 (4).
According to the Lyme Disease Association, 300,000 people diagnosed is actually only 10% of cases each year, because it doesn’t take into consideration those living with undiagnosed Lyme, and many people don’t report their diagnosis to the CDC in fear that their insurance will therefore not cover their treatment (1). Most insurance companies see Lyme Disease as incurable, and most Lyme Disease treatments include both Western and Alternative medicines, the latter of which insurance companies do not reimburse patients for. It is also known in the Lyme community that most insurance companies will deny care for diagnosed Chronic Lyme Disease.
Not that we should live in fear that something could happen, because that is absolutely no way to live, but let’s take advantage of the knowledge and educate ourselves on the disease. Hopefully that can lead to a cure, and this conversation can be one of the past and the future can be Lyme Disease free.
Now, it is our duty to learn, educate, and keep the conversation going. If an illness such as Lyme Disease is going to trend in our media, let’s make something positive out of it. It’s our responsibility to live life unafraid that something like this could happen, because that is not a way to live life, I can tell you that.
Enjoy the outdoors, wear bug spray, soak up the sun, swim in the ocean, hike in adventurous places, maybe even take a drive to Wonderland. The world is yours, revel in it’s beauty and don’t fear what hasn’t happened because it will occur less and less with the correct knowledge we have, and the world in our hands.