My Eating Disorder Story (Sam)

Sparkly and me

If I go all the way back to the beginning, I have the general personality that is associated with anorexia nervosa. I am sensitive, perfectionistic (although I never believed I was good enough to be a perfectionist), cautious, people pleasing, rule based, and prefer routine. Besides being shy, I had a normal happy childhood. However, I was always thin and a light eater. I was known for eating like a bird and constantly complimented for being thin. I also developed a phobia of vomiting which sometimes impacts how I eat.

My problems surrounding food really began around the beginning of high school. All the normal changes that happen at this time like changing schools, puberty and increasing responsibilities heightened my stress. At the time I didn’t know yet that I am autistic but my ability to communicate with others was falling far behind that of my friends. I began developing social anxiety and selective mutism. The stress of life made me begin to crave sugar all the time and I knew eating too much sugar was bad. I was scared eating sugar would change my appearance and that people would notice. That would have been the end of the world because I don’t like attention and being thin was what I believed people liked about me. I feared being negatively judged. I didn’t change my diet, but I began developing negative thoughts about myself and monitoring my weight.

Prom

After finishing high school, in the summer of 2018, I started having urinary problems. I went to the doctors, and they found I did not have a urinary tract infection or anything obviously wrong with my kidneys or bladder. I decided sugar was the problem and made a rule to avoid meals containing refined sugar. Sugar was only okay in snacks and dessert. And it worked. My urinary problems disappeared, and everything was fine. Problem solved.

The following summer I took a nutrition course as part of my university degree. I became more conscious of ingredients and calories, although I never counted calories. I decided I wanted to eat healthier and started to eliminate ultra processed foods from my diet. I began trying to make healthy snack and dessert recipes without refined sugar. Normal sugary foods were for occasional desserts only. At this point my diet had changed but I was not losing weight. Losing weight was not my goal.

University

In January 2020, right before the COVID 19 lockdown, everything changed. I suddenly developed gastrointestinal issues (basically chronic diarrhea). It was caused by the water I was drinking, but I think stress must have made me more susceptible because I was the only person affected. After switching to bottled water, I was better but then my problems gradually came back. My doctor tentatively labelled it as IBS and recommended taking probiotics but that only sort of helped. During the summer I saw a nutritionist who suggested I eliminate inflammatory foods (no dairy and reduced sugar) to let my gut heal and take a fiber supplement. Following this new diet improved my problems but I still had bad days and I was losing weight. I liked losing weight. I believed weight loss was a good thing and made me a better person. It quieted the negative thoughts about myself in my head. A part of me was also in pain. Due to my autism and anxiety, I felt hopeless and lonely. Becoming thinner made my pain physically visible and not just all in my head. It validated my emotions. On top of that, around this time my grandfather had a stroke and my mom pretty much ended up living at his house to care for him. My mom was too busy to follow up with the nutritionist. I started to restrict my diet further to make it healthier and hoped this would also help my GI problems. It didn’t. I got worse.

The next summer my grandfather passed away and mom came home. She noticed my weight and took me to the doctor. I was functioning fine, but my bloodwork and vitals showed my health was deteriorating. I was referred to a dietician who immediately flagged me as having an eating disorder. She put me on a regular unrestricted diet with vitamins and supplements, and strongly recommended inpatient treatment. The GI issues disappeared, and my health improved but I was never able to push myself to eat enough to gain a significant amount of weight.

Toronto General Hospital

After that, starting in fall 2021, I was referred to numerous hospitals each with long waitlists. While waiting my mom found a private therapist. The first eating disorder specialist I saw diagnosed me with anorexia nervosa and put me on medication but told us they could not provide further treatment due to my selective mutism. I tried the medication for a while but stopped after a few months due to the side effects. After more waitlists, hospitals, and professionals I was eventually referred to Toronto General Hospital. At this point we were seeking outpatient treatment. Toronto General Hospital was willing to treat me but only in inpatient treatment due to my weight and BMI. Mom decided that I would not do well in the inpatient environment and took time off work to treat me at home.

I’m sorry that was kind of long. The short version is that poor mental health combined with health issues and a desire to be healthy triggered an eating disorder. I never had a goal to lose weight, I didn’t skip meals, and I never counted calories. I didn’t purposefully lose weight but once I lost it, I was scared to gain it back. Restricting my diet became a coping mechanism which made me feel better about myself, but it was also slowly killing me. Now I’m on the road to recovery and I have a long journey ahead. So far, I am thankful for all that I’m learning about myself through this experience, but I would not wish the pain of an eating disorder on anyone. I wish I had some good advice I could give now but I don’t yet. Everyday is hard. All I can say now is don’t get an eating disorder. If you are struggling, take the leap and talk to someone. Seek help before it becomes a bigger issue. You are worthy no matter your weight or how sick you feel.