Healing Beyond Diet

Healing Beyond Diet, Part 6: Emma’s Story

This is the sixth post in my series ‘Healing Beyond Diet‘ where I am sharing stories of those in the (physical) 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 Emma’s story. She discusses her journey with Interstitial Cystitis and how following the IC diet threw her back into an old eating disorder.

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. 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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Emma’s Story

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My name is Emma, I am 30 years old and live just outside London. In August 2016, I was diagnosed with Interstitial Cystitis. This is chronic inflammation of the bladder wall and symptoms include bladder / pelvic / vaginal pain, urinary frequency and urinary urgency. There is no known cure and it’s so poorly understood, some Doctors don’t even believe it exists! I am also being investigated for Endometriosis but hoping one chronic illness diagnosis is enough.
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 first developed Bulimia in 2012 after falling into the trap of a restrictive diet and compulsive exercise. I sought help and went through a course of CBT (Cognitive Behavioural Therapy). I remember the parting words of my therapist “Never go on a diet Emma, you’ve come so far, don’t look back”. Therapy was a major turning point and I was behaviour free for two years.

In 2016, my diagnosis of Interstitial Cystitis was life changing. It came from nowhere and all I kept reading were horror stories of patients left in chronic pain for years. Desperate for relief, I started following a healing diet to help my symptoms. This diet was the catalyst for my relapse into Bulimia and I was rediagnosed in September 2017. I am just about to start another course of therapy and remain hopeful I will get my life back again.

2) If you began a restrictive “healing diet” for your illness, can you tell me why you chose to do that?
Diet is the number one treatment plan for Interstitial Cystitis. “The IC Diet” is followed (in some form) by a majority of sufferers. The diet aims to elimate bladder irritants found in food and drink. Surprisingly, it’s a very long list!
 
3) how did going on the “healing diet” or getting sick with a chronic illness impact your ED/relationship with food?

I took The IC Diet very seriously and eliminated everything that might irritate my bladder. This resulted in a very restrictive diet and regularly undereating. I lost weight quickly and became obsessed with keeping the weight off. This fuelled further restriction and coupled with compulsive exercise, it wasn’t long before Bulimia crept in.

I went against everything I had been taught in therapy; don’t label food as good / bad, don’t restrict, don’t diet etc. All my Bulimic behaviours returned but I thought I had it under control. That’s the deceptive side of an eating disorder, you think you’re in control when actually, it’s the complete opposite.


Some of my friends raised concerns over my weight loss but I was able to hide behind my illness. I kept telling them I needed to be on the diet and it would help heal my bladder. In reality, I took things too far but felt powerless to stop. 


I honestly believe that if I hadn’t gone on the diet, my eating disorder would not have returned. I was put in a horrible dilemma and would have done anything to get out of pain. 

 
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?
I have been very fortunate to go into remission with my illness. This means I am 95% pain free and no longer have to follow the IC Diet. I honestly have no idea if my strict diet was a contributing factor but I hope it was. I would like something good to have come from this! Sadly, my Bulimia hasn’t gone into remission and I am still very much struggling. [Editor’s note- by reading Emma’s story, you can see that it was difficult to cope with the ED while on a “healing diet” and, unfortunately, having to follow the restricted diet caused her ED to surface again].
 
5) Do you have any tips on how to manage ED recovery with chronic illness recovery in terms of diet/food

Your mental health is just as important as your physical health. Do not neglect one in favour of the other. On my worst Bulimic days, I would swap it for my IC symptoms in an instant. I can cope much better with physical pain than mental pain! 

6) Please share anything else you feel is relevant or you want to discuss around this topic

Healing diets can help but they can also be dangerous. If you are making drastic changes to your diet, please consult a doctor or nutritionist. Take help from the professionals. 

You Can Find Emma Here:
Instagram – @brokenbladder and @nomorefearfood (ED account)
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