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.

Becca's Story

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:

Victoria's Story

Hi! I’m Victoria Grant, I’m 25 years old, live in Canada, and I’m an esthetician! I have dealt with IBS (constipation) since high school. It got worse after I dealt with a severe eating disorder and developed SIBO and thyroid problems.

1. Can you talk a little bit about your history with an eating disorder and if you are still struggling or feel like you are recovered from it?                                          I’ve had a long history with an eating disorder; it probably started in high school, but definitely got progressively worse throughout the years. When I was 23 I moved to England to be an au pair and the family was very busy and health conscious. I wanted to follow suit, but I went overboard, running a lot on top of under eating and walking everywhere. I dropped to a very low weight that year and returned home within months. I had a hard time coming to terms with it, but with help, I regained weight. I still suffered horribly from IBS issues, though, so I researched what was best for IBS and found myself on a Paleo type diet, which seems to “help” my symptoms best. I do still struggle with the ED aspect because, having such a long history, it’s hard to let go of it. I want to be able to control all of my symptoms all the time, too. I still have some bad body days.

2. If you began a restrictive “healing diet” for your illness, can you tell me why you chose to do that?             I started a restricted healing diet for my multiple symptoms: IBS, thyroid problems, allergies, anxiety, depression, low energy, skin problems, and many more. I chose it because it does seem to help a lot with control of some of my symptoms. It definitely doesn’t heal it in any way, but I think that I am in less pain with it.

Going on the healing diet at first seemed liberating, as I wasn’t eating many foods anyway, so it expanded my diet in a way. Sometimes I still miss certain foods and I see how other people eat without symptoms so that sometimes makes me feel restricted and like I’m missing out. This can sometimes set off ED because it’s all about control. Going on a Paleo diet can definitely bring back ED thoughts, such as cutting more things out, as much as it can be healing. I still have flare ups randomly and will be like “ok well I have to cut that out then” and sometimes it can be a rabbit hole of cutting out foods and feeling bad about oneself. I also still struggle with my body and if I need to lose weight and be “healthier.” I have a lot of ups and downs in this journey, but we should ALWAYS base things on how we feel not how we look. As far as eating outside the Paleo diet, I sometimes treat myself to my favorite non-paleo cafe!

4. Were you able to find ways to cope with/keep your ED under control while on the “healing diet”? If so, can you share some of those tips with the readers? If not, how did you move forward?                                                               I do definitely find ways of coping with my ED while on this diet. I reach out to others with similar issues, follow like minded individuals on Instagram for support, watch videos, talk to my parents, cook, bake and experiment, dance, laugh, and work on acceptance that you’re NOT perfect and don’t have to be. You’re going to have really bad days, we all do, but you’re also going to have good ones, hold onto those.

5. Do you have any tips on how to manage ED recovery with chronic illness recovery in terms of diet/food?     For tips to manage ED recovery with chronic illness, I would say talk to someone you trust, reach out to others, try to switch your mindset from “I can’t have this” to “for me to feel better, I choose these foods to nourish myself and I honor my body with these foods.” Sometimes the mind needs a lot of fixing from past ED voices and “rules” it takes A LOT of work, even writing down your thoughts helps. Practice changing your mind, practice meditation to clear unwanted thoughts, get massages, treat yourself how you would if someone else was going through this and speak to yourself how you would to someone else in this situation. Be kind to yourself 💕

6. Please share anything else you feel is relevant or you want to discuss around this topic.                                   When I first followed Victoria on Instagram and started watching her stories and YouTube videos, I had literally thought I was the only one who went through/ was going through such a unique situation, it’s really hard on the head and heart. Then, I began to find more and more people who are like us, we are all the same and have similar thoughts and struggles, that’s what brings us together and I think that shows some strength! Though we may seem weak sometimes, we are literally so strong for fighting each day. I think we all deserve a little appreciation for that. It’s pretty great that we have access to such a far and wide online world, it can be good and it can be bad, but for what it’s worth it brings me closer to others who struggle the same as me. I’ve made so many connections to this day, and still do. I’m learning a lot, not just about chronic illness, but about people and how alike we all are. We should be kinder to ourselves and others💕

You Can Find Victoria Here:

Instagram: @gutgirlheals

This is the third 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 Dani's story. She discusses her journey with Lyme disease and how she developed a rough relationship with food after following a restrictive healing diet for treatment.

I want to first provide a trigger warning (which I will do before each post in this series):  This post contains discussion about eating disorders/disordered eating. 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.

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Dani's Story

My name is Dani, I’m 25, and I have chronic neurological Lyme disease, Chronic Inflammatory Demyelinating Polyneuropathy, Dysautonomia, Small Intestine Bacterial Overgrowth, and Hypoglycemia. I’m currently at home focusing on healing since graduating physical therapy school this past year. I love to hole up with a book in coffee shops, draw, write, and color!

1. Can you talk a little bit about your history with or WITHOUT an eating disorder and if you are still struggling or feel like you are recovered from it.                                I do not have a history with ED, but I do have a history of a distorted relationship with food. I was consistently compared to my very thin sister and from a young age felt pressured to lose weight. I struggled with eating healthier and would feel a lot of guilt if I ate something that wasn’t healthy, or ate too much.

2. If you began a restrictive "healing diet" for your illness, can you tell me why you chose to do that?                                                                                                                                A restrictive diet is a common part of treatment for Lyme disease. Lyme disease is an inflammatory illness and a lot of the symptoms from it are either caused directly from uncontrolled inflammation or can be improved by reducing the amount of inflammation in the body. My doctors informed me that by eating a clean, whole foods diet free from processed foods, sugar, gluten, and dairy, most patients will benefit from some level of symptom relief. So I switched to a more restrictive diet to attempt to decrease my inflammation.

3. how did going on the "healing diet" or getting sick with a chronic illness impact your ED/relationship with food?                                                                                                 By the time I started treatment for Lyme and was told I needed to change my diet to heal, I went at it full force because I would’ve done anything to get better. I was strict with the diet and never cheated. No processed gluten-free foods, everything from scratch, no wiggle room for what I could and couldn’t eat. As you can imagine, eventually it became impossible to maintain. There was a period of time where I was too fatigued to cook for myself, but couldn't eat out or order in while maintaining the diet. I often found myself choosing not to eat at all rather than eating something that didn’t align with my diet perfectly. I started to resent the diet, Lyme treatment, and even other people who didn’t have to follow such a diet and took their own freedom for granted. I was under enormous self-imposed stress to be perfect at the diet and do everything I could to heal. After some time, I would have something I shouldn’t on occasion and I’d be drowned in guilt. I was surrounded by all of these negative emotions from a diet that’s supposed to be healing!

4. Were you able to find ways to cope with/keep your ED under control while on the "healing diet"? If so, can you share some of those tips with the readers? If not, how did/have you move forward?                                                                                                         It took me a long time to realize that the amount of stress I had over my diet was worse for my health than just eating one or even a couple “non-compliant” things on occasion. I slowly loosened the reigns on my dietary restrictions. For example, I love the peppermint mocha coffee from Starbucks in the winter. Is one peppermint mocha per year going to keep me from reaching remission? Of course not! Once I started getting comfortable with that, everything got a lot easier. So, now I focus on nourishing my body with healthy foods as often as I can and refraining from being too hard on myself when I can’t. Overall, my goal now is to choose healthier options when I can, rather than perfection. Since I’ve been doing this, I’ve been under a lot less pressure! Talking to my friends with chronic illnesses who are also on healing diets is probably what helped me the most. As I opened up about it more, I realized that I wasn’t alone with this pressure to be perfect. We were ALL struggling with the idea of perfection in the name of healing!

5. Do you have any tips on how to manage ED recovery with chronic illness recovery in terms of diet/food.                                                                                                                           I don’t have an eating disorder and never did, so I can’t speak to that specifically. I’m included in this series to give a voice to others who have struggled with disordered eating patterns that emerged from following a healing diet, WITHOUT a history of ED. From my experience, I think the absolute best way to manage all of this is to speak with a therapist or a trusted friend about your struggles. Like I said above, I found a lot of relief by finding common ground with others regarding my newly distorted relationship with food. If I felt guilty for eating something outside of the diet parameters, speaking with friends who would be like “oh my goodness do NOT feel guilty about that!” really helped me to step back and realize that I shouldn’t feel as guilty as I had been. This of course will not work for everyone, but it’s been immensely helpful for me.

You Can Find Dani Here:

Instagram: @lymewithitrockwithit

Youtube: Lyme With It Rock With It

This is the second 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 Semia's story. She discusses her journey with Lyme disease while maintaining recovery from an 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.

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Semia's Story

Hi! My name is Semia and I am 29 years old. I was born and raised in New Jersey, but have been currently living in Florida for the past 4 years. I am a nursing student and working on pursuing my bachelor’s degree. My whole life I’ve dreamt of becoming a nurse because it is my passion and I get so much fulfillment through helping and caring for others. While this dream will continue to remain my number one goal, I was forced to put it on hold and go on a medical leave when I was diagnosed with chronic Lyme Disease in 2015.

Despite ongoing treatment, I still continue to struggle with this disease and continue the search for a treatment that will work for me. When I was diagnosed, I was still a bit early on in recovery from my eating disorder that I had battled since I was 19 years old.

It was my freshmen year in college where my eating disorder all began. I have a history of trauma that I do believe had played a role in its development. It was in my sophomore year that I had to take my first medical leave from school because my anorexia had become so severe, I was knocking on deaths door. From that point on, I was being bounced around to treatment centers all over the country, desperately fighting to get my life back yet somehow continuing to fall deeper and deeper into this sick and twisted illness. Eventually, my anorexia turned into a combination of bulimia, laxative abuse, and over exercising. It took me 6 years of treatment centers, physiatrists, doctors, therapists, you name it, to finally get on the road of recovery. This journey was what I thought at the time would be the hardest thing I would ever have to endure and that if I can overcome this - there was nothing else in this world that could bring me down.

Well, finally, in 2014 I did just that. I reached recovery which was the most beautiful feeling in the world and I sure as hell felt unstoppable. I was happy for the first time in over a decade and I finally felt free. I went back to nursing school and was so blessed and grateful that I actually was about to pursue my one and only dream.

Unfortunately, that time was very short lived. I started getting sick with multiple symptoms that doctors couldn't explain and 8 months later was diagnosed with chronic Lyme disease. Now I had a whole other battle in front of me. I did exactly what I was told to do after getting diagnosed which was to seek out a Lyme literate physician. One of the very first things she told me to do was to start eating completely all organic, as well as gluten, dairy, and sugar free. I remember thinking to myself “oh no, if I eat this way my eating disorder is sure to come back!” Although at the same time I was willing and ready to do whatever it took to get better from this awful disease and all the debilitating symptoms that were stripping my life away (I know anyone suffering from Lyme can relate). My doctor made it very clear to me that if I didn't follow her diet recommendations that my symptoms would get much worse. I needed to get better so from that point forward I became strictly paleo and stopped thinking about my eating disorder (or at least tried to) because my mind was only focused on getting rid of Lyme disease.

One thing I’d like to point out is that while I consider myself fully recovered from my eating disorder, I still continue to have the thoughts. For example, whenever I feel too full, I sometimes get this immediate thought of “well I could always just throw that up.” It’s almost like a reflex, it’s something that just happens. It doesn't bother me because its fleeting, the thought just goes away. I never act on it anymore and it doesn't impact my life in any way like it used to. I don't think these thoughts will ever go away and to be honest, that is totally OK.

This did however become an issue a few months into eating strictly paleo when those thoughts started to become a little louder and more consuming. I had found myself wanting to eat less and portion my plates smaller. At the time, I didn't want to talk to anyone about it, especially my family. They were beyond proud of me when I finally recovered from my eating disorder so, I didn't want to let them down if they knew my thoughts/urges were becoming more intense. It started to become very difficult as a recovered anorexic/bulimic to ONLY consume certain types of foods and not slip back into old behaviors. Eating this strict “healing diet” made me want to lose weight again, made me start to crave foods my doctors told me I could never eat again, and made those thoughts in my mind so much more chaotic and hard to cope with.

I am and always will have a serious sweet tooth. One of the best things about being in my ED recovery is the ability to enjoy eating chocolate cake and cookies again without the guilt! Now that I had to deprive myself of these comfort foods that we ALL are entitled to have once in a while, it was obvious my ED would try to rear its ugly head, especially since I was so early in recovery.

Another factor that played a role was the fluctuating weight that started happening as a result of Lyme. It is very common for Lyme to start messing with your hormones and thyroid and as a result my weight would fluctuate all the time. One week I would lose weight, then the next week gain more. This also made me want to take this “healing diet” to the next level, especially when my weight would go up. All in all, this restrictive dieting made it really difficult to enjoy food again. When it comes to treating my Lyme disease, I am extremely stubborn in the sense that I wanted to do everything perfectly; take all the recommended supplements and medications, detox, and eat well religiously. I found myself no longer enjoying my meals because I just felt deprived and as a result it was fueling my eating disorder even more.

In order for me to listen to my doctor’s orders AS WELL AS my body's orders, I had to find a balance. Staying in recovery from my eating disorder is just as important as treating my Lyme. I started reaching out for support to those I felt most comfortable with. I had a session with my therapist explaining the frustration and the feeling that I was losing control. I had to let go of my perfectionist mentality and start really listening to my body and giving it what it needed. I had to remember that I LOVE myself and with loving myself comes taking care of all of me in the best way I knew how. I continued to eat paleo but also started venturing out into other ways I can satisfy my sweet tooth without completely falling off the diet. I found that dates happen to be a very nutritious fruit that also taste pretty darn good! Dates are rich in vitamins, minerals, and fiber. This sweet and tasty fruit even has the added benefits of reducing constipation, anemia, diarrhea, and even boosting energy levels. I got creative and would do things like take the pit out and fill it with almond butter. To me it tastes like cookie dough! yes, it’s not entirely sugar free because all fruits have sugar, but it’s a much healthier version then most desserts. A healing diet doesn't have to be limited or strict by any means.

Our bodies are designed to have the ability to heal themselves and while food is not the only factor in doing so, it is still a component. I want my body to get everything it needs to continue to fight this disease, but I also know not to deprive myself. When my ED thoughts became overpowering, I reached out for support with my therapist who I trust with my life and also some close friends that I shared my ED journey with. One thing we never want to do is sit alone in our thoughts because that will more than likely lead to poor decisions. I also found that meal prepping was helpful to stay consistent. And lastly, I stopped punishing myself for having that piece of pumpkin pie on Thanksgiving that was loaded with sugar and carbs. Or the day I decided to indulge in 20 gluten free cookies. Yes, sometimes I pay for it the next day, but it is completely OK to treat yourself once in a while.

I strongly encourage anyone who had or is currently struggling with an ED and needs to be on a healing diet to reach out for support and let someone know you're struggling. It sure as hell isn't easy sometimes and it can become very exhausting, but remind yourself that you are a warrior! That you have come so far and sure as hell won’t give up now. There are ways to cope and to stay in recovery. There is always a middle ground and we just need to find our balance.

I hope this was helpful to anyone who has battled an eating disorder or is still currently struggling with one while also fighting a chronic illness. Please know that I would be more than happy to offer my support and love. Thank you all for reading <3

-Semia Radwan

You Can Find Semia Here:

FB name - Semia Radwan

IG - @semiaradwan

Email - [email protected]