In the state of New Jersey, the Lyme Disease Association (LDA) successfully passed P.L. 18A 35-5.1 & P.L. 18A 35-5.3 in 1992.
P.L. 18A 35-5.1 (1992)
The Commissioner of Education, in consultation with the Commissioner of Health, shall develop curriculum guidelines for the teaching of information on the prevention of Lyme disease within the public school health curriculum. The guidelines shall emphasize disease prevention and sensitivity for victims of the disease. The Commissioner of Education shall periodically review and update the guidelines to insure that the curriculum reflects the most current information available.
P.L. 18A 35-5.3 (1992)
The Commissioner of Education, in consultation with the Commissioner of Health, shall also provide curriculum guides for the training of all teachers who instruct students with Lyme which emphasizes the special needs and problems of students with the disease, in order to provide information about how best to teach those students. Each school district shall annually provide training to all teachers who instruct students with Lyme disease, based upon the guidelines.
State Laws/Policies/Reg – Prior to 2008 – Lyme Disease Association, Inc
I was first diagnosed with Lyme disease while in elementary school. After being absent for almost two weeks, I came back on crutches after waking up with a swollen knee- which is how I found out I had Lyme disease.
The school nurse and all my teachers were all well informed about my condition, being absent for so long. Yet when I returned, some of my teachers asked me as to why I was absent & how I got hurt. If they were educated (in addition to reading the doctor’s note & my mom’s note they each received) why would some still ask me why I was absent and what happened, I wondered.
Being only 12 years old, I of course cannot recall every detail of my childhood. However, what I do know for sure, was that Lyme disease was never mentioned or talked about in any of my classes before or after I was diagnosed, including elementary school and high school. What I also remember, was that this was the very beginning of being bullied for being sick; I had actually been bullied ever since I was younger for not smiling and being quiet, which I only recently became to understand was due to depression and I have always been a shy person.
Anyway, back to the issue of being educated about Lyme disease!
The first and only time I was educated in a classroom setting about Lyme disease, was my college Biology II class…
I only found out about these laws a few years ago when I first began searching for anything and everything related to Lyme disease. I’m not sure if my school/the administration was aware of these laws, I assume they did not, which is why they did not follow these laws (to the best of my knowledge as well as my parents).
So why weren’t my teachers (the ones who at least knew about Lyme disease) educating my peers about Lyme disease? Was it because they didn’t know much about Lyme disease themselves? Did they think it was irrelevant? There could be a million reasons as to why my elementary school and teachers did not educate students in Kindergarten through 8th grade, but what I do know, is this needs to change.
I was made fun of a lot for being sick; years before I was diagnosed, all the way through high school; after I did receive all my diagnosis’ and doctors finally found out I was suffering from Chronic Lyme disease as well as co-infections, I even was made fun of in college. It makes me sad to say that I still am put down by people for living with chronic illnesses. That itself is a struggle every day.
As far as not remembering much from my childhood, there are a few memories that are engraved in my mind that I wish I could erase. I may not remember all the words, but I’ll never forget how I felt.
I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel. – Maya Angelou
When I first returned to class (when I was in 8th grade), my peers thought Lyme disease was contageous; some went as far as avoiding sitting next to me or being near me , even getting up to change seats or sit at another table if I had sat down after them because I was “diseased.” I of course was very upset, but I was also upset at myself. “I wish I had been more creative,” I always said to myself. I thought things would have been much easier if I had made up an awesome story as why I had been absent for so long & why I was on crutches.
I never told anyone I had Lyme disease up until a few years ago. It was only January 2013, that I truly began to open up about my battle against Lyme disease, other tick-borne diseases and it’s long-term affects- for me it came with chronic, debilitating fatigue (many sleep disorders including narcolepsy and idiopathic hypersomnia), arthritis, fibromyalgia, Hashimoto’s disease and the list goes on.
Why did it take me so long for me to open up about my illnesses?
It took me a long time to figure out and understand what was wrong, but most of all, it is because I have been made fun of all my life for being sick.
Only recently have I gained the strength and courage to be open about my illnesses but every day I struggle to stay strong and continue being honest and open about them. What keeps me motivated, is that people will read my story and it can help educate all individuals about Lyme disease and how to prevent tick bites.
As for the bullying, that’s a whole other issue I’ll write about. But with education I hope it can begin to stop any individual, any child from going through what I went through in school.
But what if P.L. 18A 35-5.1 & 18A 35-5.3 were enforced?
Would my experience have been any better? I’ll never know