This is the fifth post in my series ‘Healing Beyond Diet‘ where I am sharing stories of those in the chronic illness community who have dealt with eating disorders or developed disordered eating habits as a result of following restrictive “healing diets”. You can read more about the start of this series here.
Today, I am sharing Becca’s story. She discusses her journey with Lyme disease while recovering from a severe eating disorder.
I want to first provide a trigger warning (which I will do before each post in this series): This post contains (intimate) discussion about eating disorders. I trust that you will take care of yourself and do what is best for you in regards to putting yourself first for ultimate healing.
Hey, I’m Becca. I’m 29 and graduated from college in 2011 with a degree in English Literature and Language. Today, that degree hangs on my bedroom wall. It was put there by my husband, Roger, several years ago, when my mind was really at its peak non-functioning level. It reminds me that even though I can’t currently work, am primarily bedridden and can’t walk without significant assistance or a wheelchair, and I constantly feel like I’ve not only temporarily lost my physical abilities, but also my ability to use my brain, there is a smart person inside me. I start with this anecdote because it encapsulates a lot of what goes into how I view life:
I’m married to my soulmate.
He goes out of his way to help me when needed
I try to be the best wife I can be by never giving up
We both try to choose joy every day, despite the circumstances.
I’m currently bedridden with chronic Lyme Disease and multiple co-infections, which have caused a whole host of issues ranging from Trigeminal Neuralgia, Postural Orthostatic Tachycardia Syndrome, Mast Cell Activation Disorder, Chronic Active Epstein-Barr Virus, Ehlers Danlos Syndrome, Craniocervical Instability, Fibromyalgia, Arthritis, CFS/ME, and a list of other conditions and syndromes. We now know these all came about, or were exacerbated, as a result of going over twenty years without a proper, accurate diagnosis or treatment of Lyme disease and co-infections. My body completely crashed in January of 2013. I’ve also had many other mental health conditions and diagnoses, as well, caused or triggered by both Lyme and genetic predisposition.
That was a halfway decent segue into talking about my history and experience with an eating disorder. I honestly often shy away from writing this out–not because I don’t want to share, I love sharing, but because it seems too daunting a task to try to pare down my history with eating disorders into a number of paragraphs or sentences. I’ll try to be as concise as I can. Sorry this may be long.
My history with an eating disorder is very long. At this point in my life- 29 years old- I have officially been fighting my disorder over half of my life (15 years as of writing). That’s not to say I haven’t had moments of recovery and I’m not even close to being as entrenched as I was just over a year ago, but I do believe the thoughts may be something I will struggle with for the rest of my life. That’s not discouraging to me, it’s just something I have to face daily and take on. At times, it’s easier than others and lately, as I’ve made a lot of progress mentally and with my faith, I can even completely drown the voice out sometimes.
Let me provide a more comprehensive timeline. Over the course of Spring and Summer of 2003, I faced four major devastating losses in my 14-year-old life. The first two revolved around school. I always identified as the “perfect” student, an introvert, and I easily internalized that I had done something “wrong” or “not perfect enough”, which led to feeling “not good enough” when I lost a very big award as a young girl. The other two events happened that summer. I lost someone very dear in my life, suddenly, to a move. It was heartbreaking for me. I get strongly attached to others and this was the first time I was too emotionally upset to even think about eating. It wasn’t conscious, it was physical. I had gotten on the scale totally randomly (because it wasn’t something I did regularly then) the day before the heartbreak and then again after three days where all I managed was some of my cousin’s banana ice cream. This was my first experience of getting on the scale, seeing I had lost a few pounds, and thinking, “Wow, I think this could help, I can control this, even though I can’t control anything else that’s happening right now.”
I also started high school at this time. I’ll just mention briefly that I have always been historically bad with major changes. I become very vulnerable, very naïve, and continued down the path of perceived control, because that’s how I attempted to cope with hated change and with feeling a need to be perfect for the guy, the school, my family (only self-imposed).
By the time Christmas and the New Years rolled around in 2003, I had gone downhill so quickly I missed 6 weeks of my freshman year of high school in treatment attempt number 1. I did “well” (i.e. complied) for about a month after I got home. I then started falling fast again, only to end up in another center, this time for two months, 2,500 miles away from home. This treatment center saved my life for the next 7 years. While I continued to struggle throughout high school and college, I never got to the point where I wasn’t able to somehow turn it around. I credit my parents for this in high school and I largely credit my mentor and my now-husband, along with the staff at my small college campus health center, for keeping me alive and helping me graduate on time.
After I graduated college in May of 2011, I had three major changes again: graduation, getting married three weeks later, and starting my first real-world job. Ironically, on my wedding day, I weighed the most I’ve weighed as an adult and I felt absolutely beautiful that day. It didn’t take long for me to slide backwards, though, and by September I had been let go from my job to enter my third, and what I’m determined will be my FINAL, treatment center, leaving my husband of 3 months for 5 weeks of treatment.
As I stated above, I consider myself in recovery. I currently just deal with fighting the thoughts. They are not anywhere near as prevalent as they were even a year or two ago, but they are still there in the background. I’ve just gotten better at prioritizing what I want: health, freedom, and LIFE. That helps silence the disordered voice quite a bit, when you learn what you truly desire is so much more than any disorder could ever give you.
MY EXPERIENCE WITH HEALING DIETS
When I was first finally diagnosed with Lyme and co-infections in June of 2013. I immediately took the doctor’s recommendations and overnight I eliminated a handful of food groups along with eliminating a whole host of other individual intolerances. As you can imagine, this was quite daunting and while I was initially scared it would trigger a disordered response, I was surprised to find myself becoming a quick expert at looking at ingredients and focusing on health, not calories. All of this may sound super restrictive, but being forced to try all these new ingredients actually made me fall in love with cooking for the first time in my life! Falling in love with new ingredients and cooking allowed me to expand my eating under the Lyme diet and not have it trigger me back into a full blown eating disorder.
I tell myself any time I start to feel old thoughts and behaviors creep in, to remember the bigger goal, and then I let my mind wander into what a healthy future with my husband will look like. Being able to enjoy events and going out together. Starting a family. Being able to attend church together every Sunday. Going figure skating. Working on my Christian rap lyrics that I intend to perform publicly one day. Having a “honeymoon do-over” at Disney World since our marriage has mostly been plagued by illness.
THOSE are the things I specifically think about to keep my focus on eating for health. This includes my feeding tube, which I have due to gastroparesis from Lyme. It’d be easy to just not hook it up and let myself fall into the disorder again, but at this point in my life, I find it easier to distract with thoughts of the above. I also distract myself with listening to music, writing poetry, actively trying to encourage others with our daily vlog on YouTube, and any number of things I can do to further my health, even if that’s just lying still every morning when I’m awake and thanking God for the gift of another day, despite how I may feel physically. It’s not always easy, but it has gotten easier the more I work on it.
Fighting chronic illnesses that often require any number of restrictive diet protocols, and having a history or current experience with an eating disorder, is a very hard tightrope to walk. I know, I walk it every day. It’s easier for me now, partially because everything is calculated for me, but I’d be lying to say I don’t stress about the day I once again have to teach myself to eat healthily without restricting and while enjoying it (once my feeding tube is out and I can expand my diet further once healed from Lyme). Sometimes that concept seems so far away, yet I know when the time comes, my will for life is so much stronger now than it ever has been.
As far as tips for managing ED Recovery with chronic illness recovery in terms of diet/food, my number one tip would be to stop following any “recovery” accounts on social media. Specifically, ones that only show pictures of food. I realize many people form strong bonds online, so I’m not telling you to give up on friendships, but when you are going through a chronic physical illness that requires you to make certain dietary changes, you cannot compare yourself to another person recovering from an eating disorder (or to others in general) who doesn’t have the same rules they have to follow. Seeing these posts can be both triggering and upsetting (and yes, sometimes they may be encouraging, but in my experience, when in a disordered mindset, or predisposed to one, they aren’t the best accounts to follow). I do think it’s fine to follow individuals who promote a legitimately healthy lifestyle, especially if they are following the same/a similar protocol for a potentially similar illness/condition as you, because they could be great sources of inspiration (though I caution: only follow accounts who truly have it together, like Lemons ‘N Lyme, here! Not everyone who says they are qualified actually knows what they’re talking about).
I would also suggest starting each day just being thankful to be alive, and voicing that out loud. There’s something in the power of speaking it aloud that makes you see the day as a gift, and makes you less likely to want to waste such a beautiful gift on something as unhelpful and unhealthy and unnecessary as sitting in disordered thoughts or acting on those thoughts. Make a list of things you love/can do/want to do in life that have nothing at all to do with food or eating and recite that list to yourself. Keep it close to your heart. Find your WHY. My mentor calls it your “key to life.” Find the one thing (or more than one!) that will keep you going, no matter how hard it gets, and will keep you determined to stay healthy and out of the eating disordered world. Embrace it. Chase it. Never give up fighting for it, no matter how hard it gets, because you are worth so much more than any lying, deceiving disorder says you are. And so am I.
You Can Find Becca Here: