Sharing My Story: Sara

Sara is from Sweden and has type 1 diabetes. She has lived with an eating disorder and shares her story to educate others and help remove the stigma she faced.

It's easy to worry about food. Do I eat the wrong diet? Do I eat enough? Do I eat too little plant-based food? Too much meat, too much fast food, too little homemade food and so on. These are perhaps the questions that most people in general sometimes ask themselves. But with type 1 diabetes you also have questions about blood sugar and insulin. How much insulin do I need? Should I split my bolus? How much fat does it contain? Protein? Time for injection before meals? How high is my blood sugar right now? How many carbohydrates are there on my plate? Did I bolus enough? Should I eat the whole portion? I can continue with these types of questions that a person with type 1 diabetes lives with every day.

When I was 25, I developed an eating disorder: anorexia. Thank goodness I did, because if I hadn’t, I would not be the person I am today, advocating and raising awareness about type 1 diabetes.

In fact, eating disorders have the highest mortality rate of any mental illness, and having type 1 diabetes makes it twice as likely to develop an eating disorder. Food is a central part of a diabetic’s everyday life, and to keep track of what you eat is a matter of surviving. When I look back on my life and look at all the challenges that I have faced, I sometimes get overwhelmed, but then I look at how far I have come and the person I am now and realize that everything I have been through has made me the person I am today. And for that, I'm grateful. For that, I want to give the younger version of myself a pat on the back; for all the lies and secrets held, for every rule that was set up and broken, for living so stigmatized. It was all a part of my fight living a normal life.

One thing that triggered my eating disorder was when I decided to eat less and to cut out carbs to keep my blood sugar levels at as straight a level as possible. When my blood sugar levels and my A1C was perfect, it was hard for my endocrinologist to see my eating disorder at first.

The problem when you have both an eating disorder and type 1 diabetes is that you can't go crazy about food. I couldn't let go of the control I had with both keeping my blood sugar in range and the number of carbs (and calories) the food had. I was so scared of food.
The thought of that today is scary. I was afraid of the only thing in the world that was and is keeping me alive.

It took a long time to change habits. Questions that I had were: What is happening when my body changes, what if I fail, what if people around me change, what if they hate me or don't like the "new me"?

My eating disorder wasn’t ideal. My eating disorder is far from something I wish for in life.
I thought that I had control over everything, but looking back, I had no control at all. I lost friends, came further away from my family, I almost lost my work. I prioritized working out instead and the worst part–I lost myself. I didn't know who I was or who I was supposed to be.

My journey has been long and tough. It took a long time to realize who my real friends were and to see that they tried to help me while I just pushed them away. That my family was trying to help me and that I had the best support. Today, it is so clear to me how afraid I was. I remember crying myself to sleep, and waking up, still crying. But with all the help I got, I've got the energy to keep on going and to recover.

Food is something we cannot get away from. We need it to live. But since there is always carbohydrates there, it is a problem that is central to a person with diabetes. It is an ongoing battle while we still need to maintain the best blood sugar levels possible. I have found that most of us diabetics are a bit competitive with ourselves. We want to have the best blood sugar curve at the end of the day, which is encouraged for our own health. However, this constant monitoring of food and glucose levels was something that took my competitive instinct to a whole new level in combination with other external factors.

I know that my time spent sharing my story makes a positive impact when my followers tell me that they got inspired by my way of living and that they now are less afraid of life with a chronic disorder.

I know that we still are lacking information sharing when another girl just like me is hospitalized for anorexia after not receiving any help in dosing the right amount of insulin to the food she needs to eat.

We are moving forward in the right direction, but are we moving fast enough?

Sharing my story with all of the amazing people out there gives me hope! I believe that we can be a part of a global movement to remove the taboo of talking about problems with food and insulin. You give me hope.

More about diabetes and eating disorders