Eating Disorder Awareness Week and TOFS Awareness Week 2024 - Round Up
This post is a bit late, but it is here nonetheless!
26th - 3rd March 2024 marked two awareness weeks that are close to my heart for completely separate reasons.
1) Eating Disorder Awareness Week
2) TOF/OA Awareness Week
If you are thinking, ‘what on earth is TOF/OA?,' I’m not surprised! It is a very rare condition that affects 1 in every 3500 people. ‘OA’ stands for Oesophageal Atresia and is where the food pipe (oesophagus) does not form correctly so babies are unable to feed. ‘TOF’ stands for Tracheo-Oesophageal Fistula and is where the food pipe joins the airway. I hadn’t heard of them either, until 3 years ago when my son George was diagnosed at birth.
So why are you reading about TOF/OA on an eating disorder recovery coaching page? Because George was the trigger for me to retrain as an eating disorder recovery coach. Having a child unable to swallow, requiring significant surgery (at only 2 days old!) gave me a greater appreciation for our amazing bodies - how they function, how they grow, and how no two bodies are the same. It also gave me sincere gratitude for the doctors and nurses who performed the ‘correction’ and nursed him back to health. It made me realise I no longer had any food issues of my own and that I could use any learnings from my own experience to help my son feel comfortable in his own body. It made me want to move towards a more meaningful career.
Here are a few overlaps with my experience recovering from bulimia and raising a TOF/OA child.
Food Rules
My son has strict food rules to follow. There are ‘safe’ foods and ‘unsafe foods’ and it is imperative from a safety perspective that we don’t push him to eat anything his body can’t handle. In this case, food rules are important for the safety of my child.
In my recovery from bulimia, I had to LET GO of my food rules. No more ‘good’ and ‘bad’ foods. No more ‘allowed’ and ‘not allowed'. I had to practice eating my fear foods and sitting with the discomfort of them inside my body, realising it wasn’t so bad.
How do I incorporate these experiences into my coaching? I aim to reduce as many food rules as possible for my clients, with the recognition that we may have different and specific needs. I.e. Allergies, religious reasons or trauma based experiences to consider. Knowledge is power, and the more we understand our own bodies, the more we can trust them.
Choking/Food Trauma
It’s very common for food to get ‘stuck’ in the throat of a TOF/OA individual, especially as a child is learning to eat and understanding the width and strength of their food pipe. This is commonly known in the TOF/OA community as a ‘stickie.’
There is a less known eating disorder called ARFID - Avoidant Restrictive Food Intake Disorder, which can be triggered (amongst many other things) by traumatic experiences relating to food.
How does this overlap? I am educating myself each day on the intricacies of ARFID so I can support people and families with this eating disorder too. I am using my day-to-day experiences witnessing and supporting my son with his ‘stickies’ to show him that he can be guided by his own body and trust it knows what to tell him.
I have a lot still to learn and at times, it can be very overwhelming. Recovering from builmia many moons ago was not easy, and either is living with (or supporting another) with a disability. But I’m so grateful to be doing my part raising awareness of both eating disorders and TOF/OA, and I absolutely love working with a range of wonderful humans on their own healing journey.
You can find out more about TOFS here and eating disorders here.
You can my awareness campaigning on Instagram here (or at the bottom of my website).
As always, drop me a line at info@mayyoumend.com if any of the above interested you/resonated with you!
Kirsty
