For those of you who aren't familiar with NEDAwareness Week (proper name: National Eating Disorders Awareness Week) and are wondering what the heck I'm talking about, you can either click here for the entire website about the occasion or you can continue to read here as I express my thoughts, testimony, feelings, and various other things as they pertain to this week.
No, this isn't primarily Lyme-related, but there is a connection that will come at some point, and even though the focus isn't solely Lyme & Co, I still feel it's important to write about because it is/has been a very big part of my life for a long time, and as I've said before, I tend to be transparent when discussing issues I deal/have dealt with because I truly think that's one way to reach people and spread the message that no matter what you're facing, you are not alone and there is hope.
NEDAwareness Week (henceforth referred to as NEDAW because it’s a lot easier to type) has been a very important week of every year for me for nearly a decade. My first official participation in NEDAW activities was in 2007, my senior year of high school, over 3 years into what would eventually become a 10+ year battle with various eating disorders (the 3 previous years I had only participated on a small, personal scale, not involving anyone else). 2007 was also the year I first began giving public speaking presentations on awareness at local high schools and garnered attention from our local newspaper about the events we held that year.
Throughout college, NEDAW was something I looked forward to every year. Being an officer in a small-but-awesome group who took on the responsibility for the NEDAW activities on campus each year, I always felt more energized and more connected during this week than any other, and my passion for public speaking grew exponentially every time I was able to speak to another group of high school students. I continued to do the presentations throughout the year, whether it was NEDAW or not, and this was true after I graduated college in 2011, as well.
But this year, for the second year in a row, I’m faced with the reality that I can’t give my presentations, I can’t drive/walk around town and talk to business owners and plaster my awareness posters on their windows/bulletin boards, I can’t organize a guest speaker, I can’t even travel the 20 miles it would take to attend NEDAW events at the college closest to my home because even if I could make the ride/drive, I wouldn’t be able to sit through an entire discussion or presentation without worrying about a weird symptom flare-up/falling asleep because of severe fatigue/a sudden-onset herx reaction (past posts have dealt with this phenomenon).
So obviously, when I look at it like that, the first thoughts I have are of the negative and defeatist nature. And that’s no surprise, because when I go back and read the previous paragraph, one word leaps out more than any other--can’t. (And goodness gracious, I could go on and on about how I hate that word, but that’s another post in itself.)
Yes, the reality is I truly can’t do those things this year, and that hurts on a very deep, emotional level. But, thanks to the social media era in which we currently live, I can do things like write this post and connect with people from around the world (because even though this is awareness week in the U.S., this entire month is commonly accepted by those who champion the awareness cause as eating disorders awareness month), and that is still pretty daggone cool!
If you haven’t known me for very long, or if we’ve not been friends (in real life or on social networks for a decent length of time, you may be wondering why exactly I care so much about this week. I’m hopeful your curiosity will be satisfied in the following paragraphs.
As I type this sentence, it is 1:52am on February 24. I am wide awake, as is the case typically 3-5 nights a week—honestly I probably won’t be able to sleep until the rest of the world is up and working, and I typically attribute this to Lyme & Co and the wonderful annoyingly frequent day-night reversal Lyme & Co causes for so many people fighting this battle. Tonight I think it’s something different, though. I think God has kept me awake for 2 reasons:
1. So I can write this post just in case I’m unable to write/share later, and in doing so share my personal testimony of why this week is so important, and
2. So I can spend quality time with Him, something of which we all could use more.
As for addressing bullet point 1, I’ll be as succinct as possible, but be warned that’s difficult for me when writing about something that incites such a level of passion and emotion. But I promise I’ll try.
There are times in my life (ie. The past decade, particularly before this Lyme craziness had a name and was at the forefront of my mind in all things health related) where being wide awake at now 2:08am would have been due to various aspects of struggling with an eating disorder. Through personal experience and relationships, I’ve decided insomnia is a universally shared symptom among most, if not all, eating disorder sufferers. Whether my insomnia was due to any specific eating disorder behavior (I won’t list them here because I don’t believe that’s helpful to anyone), or whether it was a result of the physical and mental state the behaviors ultimately caused and my uncanny ability to lie wide awake having a conversation with Ed (eating disorder, for those who aren’t familiar with the acronym/personification) about everything I did “wrong” that day or everything I must “fix” the next day, or whether it was a combination of these as well as the fact I was in high school/college/newly married/new to the work force, I honestly can’t say. The only thing I know for certain is that insomnia and Ed are BFFs. Meaning, not only was I constantly plagued with eating disordered-thoughts and battles throughout my days, but also throughout a majority of my nights for roughly a decade.
But while the insomnia apparently deserved its own paragraph, it’s merely a segue into a much larger scale aspect of my eating disorder/recovery story. As I mentioned above, Lyme & Co gets most of the blame for my sleepless nights nowadays. This is bad in that the nights where I get literally zero minutes of sleep seem to be at an all-time high, but I’d rather focus on the ways this is a good thing, and how it relates to the overall picture of my life.
Since being given my official Lyme diagnosis in June of last year and continually learning about everything that goes with it, Ed has taken a back seat in my life. Meaning, while Ed still sometimes puts thoughts into my head, especially if it’s a day I’m already feeling emotionally frazzled, they don’t dictate how I live. Yes, there are days where I’m reminded of old thoughts/habits, and even days where I’m put in situations where I have to face things that formerly would have sent me into a downward spiral in all things Ed-related, and these things/situations still aren’t easy. But you know what is surprisingly easy? Ignoring anything Ed tries to say. Because I’m currently in a situation where, if I listened to Ed or let him dictate my actions, I wouldn’t be doing a fraction of the things I currently have to do to beat these illnesses (Lyme, et al.), and if I weren’t doing everything I’m currently doing as part of my treatment protocol, my chance of healing, or even staying alive, would be seriously diminished.
One cool thing about all this is I’ve realized it’s possible to ignore Ed and live a life where my every move isn’t dictated by him, and I have no desire to go back to the way things were. Ever. Because I enjoy, and deserve, this freedom from the dictatorship Ed ran in my life for over a decade.
I’ve written before how living with a chronic illness can change your priorities and outlook on life, and while I wouldn’t recommend lying in a tick-infested area and praying you get infected with Lyme & Co as a viable or safe recovery strategy, it has essentially been the best thing that has ever happened to me as far as my recovery from Ed goes.
Because when faced with the choice to either dig in my heels and fight as hard as I possibly can to get my health and my life back, or to continue to hang out with Ed and do further damage and making regaining my health and my life an impossibility, the choice doesn’t really seem all that difficult. In fact, in my mind it’s not even really a choice, because choice implies there are two possible options, and the second scenario isn’t even an option. And while it took being faced with these new health battles for me to fully realize this truth, I’m writing about this here, where everyone can see, to offer hope that a life outside of Ed is possible, no matter how long you’ve been in the trenches, even if you’ve thought for years it isn’t.
I didn’t choose to develop an eating disorder all those years ago—after all, no one who has an eating disorder chooses to have an eating disorder, because eating disorders destroy lives in every conceivable way—but I can make am making the choice to continue to live the rest of my life outside of Ed’s tyrannical reign.
Because I can.