how the 2011 ilads conference changed my life.
September 26, 2012
last october, i made the decision to attend the ILADS conference in toronto. the registration form made it pretty clear that the conference was geared towards ilads members, doctors, medical practitioners, researchers and other professionals who were working in one form or another with lyme disease. the conference fees were arranged in such a way that i ended up paying as a “non-member, non-physician,” which is the most expensive way to go. in no way did i feel like there was an unspoken deterrent for patients to attend, i was just not the target attendee. i decided to go anyway.
scouring the web for information on lyme disease and co-infections, i was having abundant troubles finding sources that i felt certain were credible. i questioned the validity of most of the articles and research papers i read. there were a few doctors whose work i felt fairly confident in, but i floundered with the majority of readily available information. at this point in my diagnosis, i devoted most of my time to learning about lyme disease with the hope that the more i learned, the more equipped i would be to create an effective strategy to beat lyme and babesiosis. at the time, i didn’t know enough of bartonella symptoms to be able to recognize that i was also infected with that. but no matter how much information i tried to take in, i felt like i didn’t know enough. i felt like i was battling an invisible opponent and i obviously didn’t have the upper hand.
i went to the ilads conference feeling confident that i was going to be able to extract at least some concrete evidence that would help me get better. the presenters and speakers were names i had come to recognize from my research. i studied the conference schedule, trying to figure out how i was going to make it to all of the lectures that i was interested in. there was really no way to do that, with multiple presentations slotted for every hour of the weekend. so i starred the ones i knew i shouldn’t miss and made an optimistic calendar of all of the lectures i wanted to attend. i felt a bit nervous about going. i was worried that my brain would be in a lyme fog and i wouldn’t be able to absorb any information. i had concerns about sitting still for two-and-a-half days. fortuitously, the dates of the conference corresponded with the general time that i had planned on visiting a good friend in toronto. even if i was too sick to really be present at the ilads conference, i still had a great reason to be in canada.
i have to say that going to the ilads conference made an immeasurable impact on my health. in all my years of enduring illnesses, this was the most empowering thing i had ever done to really take control of the direction of my health care. though i knew that no one else was going to effectively manage my autoimmune and tick-borne diseases, i had just thrown myself to the wolves and hoped for the best. i had a good llmd (lyme literate medical doctor) but i also owed that to the person at ilads who put me in contact with her. my lyme doctor was also in attendance, which was great because i was able to check-in with her periodically. she helped me to filter through the stack of new information we were both gathering.
i wasn’t able to interact with other conference attendees on a meaningful level. i just didn’t have the energy to use any of my social skills. the best i could do was sit with my laptop and take the most detailed notes i could manage. i was typing frantically most of the time, only to realize later that the majority of what i wrote down was actually in the disc of powerpoint presentations provided with all of the other conference materials. i have a mac air and didn’t have my disc drive with me… but it was really useful for me to listen as closely as i did and to create my own notes on this incredible research that was all new to me. there were so many small moments, clinical evidence presented as side notes, that transformed my understanding of how these diseases really affected my body and my mind. i made connections between my current symptoms and my history of unexplained medical problems. for the first time in a long, long time, i didn’t feel like i was crazy or alone in what i was going through. there was medical proof that my experiences were real. at that time, i needed that more than anything.
at the end of each set of presentations, there was a question and answer session. i used every single one of these opportunities to ask questions that i had put in my notes. when the moderator chose which slips of paper to ask the panel, my questions were always selected. i felt that the fact that my inquiries were chosen demonstrated that the concerns of a patient, an infected layperson, were often somewhere in the margins, left out of the primary discourse. i was asking for different answers than a clinician would be and i was also asking for different reasons. what i sought was, what i think most of us suffering from these diseases want to know, how can we apply these treatments in a realistic, practical and effective way? what methods can we employ that are going to help us get well?
not only did i leave the conference feeling like i had a much better handle on what was going on in my body, i finally felt like i had agency and the ability to navigate my healthcare. this alone was priceless, but i also was blessed to be able to connect with my current lyme doctor. the work that he is doing, in my opinion, is revolutionary. he’s a visionary and he is developing treatment methods that actually work.
i’m registered to attend this year’s ILADS conference (november 2-4) in boston. attendance for a non-member, non-physician is $520, if you register before october 10th. like everything, the cost is prohibitive for a lot of people, but if you have the means to attend and you’ve never been before, i can’t stress enough how powerful this was on my path to wellness. being well-informed is the greatest tool we can use to fight these diseases and the ilads conference is an amazing way to access reliable information, especially in just 2.5 days. if you’re not able to go in person, you can see videos of some of the presentations. it might not be the same as being there in the real, but the information is the same.
hopefully, i’ll see some of you there. i’ll be the freckled little, dark-haired girl typing like a maniac somewhere in the back of the room.