In this blog post, I interview HELEN S. Helen is in her early 50s and has struggled with restrictive eating for much of her life
Background to, and description of my condition:
I have had eating difficulties all my life: from the time I was weaned as a baby and fed solid foods to now, in middle age. For many years I have had great difficulty tolerating a variety of foods based upon their smell, taste and texture. I also have OCD – which manifests in many forms, but mainly as ‘contamination’ fears. I was diagnosed with autism in my 40s. I am currently undergoing therapy for ARFID, which is probably the most helpful treatment I have had to date for my eating difficulties. Being underweight for many years led to me developing many physical health problems – which could have been avoided had I been given appropriate help with eating much earlier in life. The reasons why it took so long for me to access useful treatment include the era when I was born (1960s), misunderstanding of my difficulties and likely misdiagnoses.
As a toddler I could only tolerate bland, soft foods and refused any food other than warm milk, boiled eggs, soft white bread and bananas. My mother’s valiant attempts to introduce me to new foods was met with meltdowns.
When I started school, age 4, I became extremely anxious when in large groups of people and found sitting in a dining room with many other children to eat ‘school lunch’ intolerable. My anxiety led me to reject ALL food that was given to me at school, including the foods that I would eat at home. Sadly, the response of ‘dinner ladies’ and teachers was VERY unhelpful. I was sent to the Headteacher’s office and threatened with ‘the cane’ (a form of punishment permitted in schools in the 1970s…) if I refused to eat my school lunch. This created so much fear within me that I developed a phobia of school itself. Yet, I was a very intelligent child who enjoyed learning and had learnt to read and write even before starting school at age 4 years.
Around the age of 6 I developed emetophobia (a phobia of vomiting). This started after I picked up gastroenteritis, which traumatised me. I fixated on trying to find out how and why people get sick, and when I learnt that hand-washing is important to stop the spread of infections I developed ‘contamination OCD’ which manifested as intrusive thoughts about vomiting, or others vomiting, and was accompanied by repeated hand-washing and avoidance of anyone who I believed to be sick (even when they weren’t sick…). This made tolerating school even more difficult. My mother took me to our family GP who suggested that I was being naughty and feigning illness because I wanted to stay at home with my mother. He threatened me with a ‘nasty injection’ if I didn’t ‘behave myself’ (i.e. attend school and eat at school). That didn’t help me at all.
By age 8, I was significantly underweight. Because the school nurse was concerned about my food refusal in school and my general health it was recommended that I take a packed lunch to school which I would eat alone in an empty classroom while the other children were eating in the dining hall. This worked well. Although I would only eat strawberry jam sandwiches and chocolate biscuits, I did gain weight. I was prescribed vitamin and mineral supplements to counteract my limited diet.
At age 10-11, when I was starting puberty, I experienced repeated sexual trauma. I didn’t tell my parents (who would have been horrified had they known). My already high levels of anxiety became catastrophic. At this point in time I was a promising child athlete and was engaged in formal athletics training. Because I found this training calming, I started to exercise outside of scheduled training sessions in an obsessional manner. I was too anxious to eat. I didn’t want to lose weight and had no fat phobia or desire for thinness, but my over-exercise and restrictive eating inevitably led to weight loss. I didn’t like this weight loss, both because of the way it made me look, and because my athletic performance declined. However, I was unable to stop either the exercise or the food restriction.
By age 12 I had been diagnosed with Anorexia Nervosa (AN). I had never heard of this illness before and accepted the diagnosis. I didn’t have typical ‘fat phobia’, fear of weight gain, or a desire to lose weight. I was referred to a dietitian and a paediatrician, both of whom I saw weekly with my mother. I wanted to gain weight, but was unable to follow the diet prescribed to me because it included foods that overwhelmed my senses. Therefore, I ate what I felt I could (‘beige foods’: white bread, cheese, pasta, bananas, eggs, milk) – and because I was desperate to get back into my sports, I tried hard to gain weight, and succeeded. By age 14 I was back playing competitive sports and by age 16 I was representing my County in two sports.
From age 14 – 24 my weight was normal and healthy, but other aspects of my life were not so easy for me. I struggled socially due to undiagnosed autism, had unusual, obsessive interests that made my peers think I was ‘odd’ and was suffering PTSD from sexual abuse.
At age 24 I developed extreme anxiety while studying away from home for my PhD. The academic work was no problem, but socially I couldn’t fit in and I felt lonely and isolated. I became too anxious to eat and started to over-exercise to relieve stress. As previously, weight or body image concerns played no role in my urges to restrict food or over-exercise. I lost a lot of weight suddenly and became physically compromised. Although I wanted to go home to stay with my parents to try to get better, my father wouldn’t allow me.
From age 25 – 40 I held down a job, but was significantly underweight and was unable to eat well. I was unable to exercise much, despite the desire to do so. Sport and exercise were important to me because they were an integral part of my identity and things I enjoyed and my life was utterly miserable a lot of the time due to depression. I collapsed physically and was hospitalised due to very low weight and medical instability. This then led to a referral for treatment of AN, a diagnosis I questioned because I my restrictive eating was not motivated by any wish to lose weight, or to be thin; I had no fat phobia and hated my thinness.
While undergoing treatment, I was formally diagnosed with ‘high functioning’ autism and it was concluded that my eating difficulties were linked to general anxiety, OCD/emetophobia and sensory difficulties tolerating the taste and texture of various foods, as well as feelings of fullness [I associate the latter with vomiting so fullness is triggering to my emetophobia]. My diagnosis of AN was removed, which I considered helpful. This was prior to the publication of DSM V and ARFID being recognised in adults.
More recently I have been undergoing treatment for ARFID. The treatment has three main objectives: first, to ensure I consume adequate energy to gain weight and maintain that weight gain; second, to try to overcome feelings of fullness so that I can consume higher volumes of food; third, to gradually introduce foods I struggle to eat into my diet due to taste and texture so that my diet is better balanced.
Since being in treatment I have progressed with all the aforementioned objectives, although not fully. My depression has largely lifted because I am better nourished, and I feel much stronger because I am eating larger volumes of food, a more balanced diet and am also strength training to gain lost muscle mass. I feel more positive than I have done for a long while.
How hard/easy was it to get the correct diagnosis?
It took 45 years; therefore, very difficult. Being misdiagnosed was very difficult because it didn’t help me to improve my diet or health and I found it invalidating that clinicians didn’t believe me when I denied symptoms of AN.
What have been your experiences as an adult with ARFID in terms of being understood by treatment professionals?
Poor, but this is hardly surprising given that ARFID is a new diagnosis. My experience has been that if you restrict food/diet and are underweight, that you are invariably diagnosed with AN and assigned a list of cognitions relating to weight, body image, fat phobia or ‘moral’ eating that do not make sense of your experiences.
What have been the most and least helpful resources and advice in terms of managing ARFID?
I have accessed a few published papers about ARFID, but in the main, the help has come from a therapist knowledgeable in both ARFID and autism.
What resources do you think are needed but not available currently?
It is important to recognise that even if they look similar superficially (i.e. restrictive eating, food fears, weight loss, anxiety, depression, OCD-like behaviours) that ARFID is different to AN. People with ARFID do not have the same cognitions as people with AN. Recognition also that some people with ARFID also have OCD and/or ASD, which can complicate treatment, due to rigidity of behaviours. More GPs and ED specialists need to be trained to diagnose and/or treat ARFID.
Any advice for parents/family members of a child with ARFID? And does this differ from advice you would give about an adult with AN?
Don’t assume that re-feeding and attainment of a healthy, set point weight will cure the ARFID. The mechanisms of restrictive eating in ARFID are different to those of AN. ARFID is underpinned by sensory sensitivities – to the smell, taste and textures of various foods; to bodily sensations of fullness; to a traumatic event that makes the person earful of eating (e.g. choking, or vomiting after eating per se, or eating specific foods). If the child denies cognitive characteristics of AN, then believe him or her!
Any advice for treatment providers who may experience patients with ARFID?
Don’t try to fit your patient/client to a diagnosis that fits your knowledge or skills. Listen to what they say and refer them if you don’t know how best to treat them. Consider co-morbid autism and/or OCD. Remember that every ED patient/client is an individual and that no two (or more) patients/clients are the same.