Living with ARFID
ARFID or Avoidant restrictive food intake disorder is a condition where a person will avoid certain food or types of food. They restrict their intake of food in terms of the overall amount eaten or type of food. Put simply a person with this disorder will physically starve themselves if their preferred food is not available.
I was completely ignorant of it until my little girl developed a mild form of it. Hers manifests as the fact she will only eat three varieties of baby food for lunch and dinner, she is 3. In addition to this, she will eat a handful of snacks including Quavers. We are one of the luckier parents, join any support group and some parents struggle more than us. One story I read of a young man who only ate breadcrumbs.
ARFID can happen to any age, at any time in their life.
It isn’t a behaviour issue.
Many people have said to me that she will eat when she is hungry, this is not true. Parents of ARFID children live with the fear their child could starve themselves rather than eat something.
Some parents are going through the agony of having to tube feed their children because they won’t eat.
During recent times the fear for our little girl has increased, as idiots start panic buying food. As her variety are one of the cheaper on the market it is these they are stockpiling. She could quite literally starve, whilst someone has these foods on their shelf in case they need them. It makes me angry and breaks my heart in equal measure. We have an amazing support network that always help us source this food, we are not at a dangerous stage at present, but we could be if this continues.
Why does ARFID Occur?
There are several reasons why people develop ARFID. They may be sensitive to the taste, texture, smell, or appearance of certain types of food, or only able to eat foods at a certain temperature. This can lead to sensory-based avoidance or restriction of intake. This is more common with those on the autism spectrum. For our little girl, this is her issue. Some textured foods physically make her gag if she has them in her mouth.
People may have had a distressing experience with food. Such as choking or vomiting, or experiencing significant abdominal pain. This can cause the person to develop feelings of fear and anxiety around food or eating, and lead to them avoiding certain foods or textures.
Others may experience more general worries about the consequences of eating that they find hard to put into words. They restrict their intake to what they regard as ‘safe’ foods. Significant levels of fear or worry can lead to avoidance based on concern about the consequences of eating.
In some cases, the person may not recognise that they are hungry in the way that others would, or they may generally have a poor appetite. For them, eating might seem a chore and not something that is enjoyed, resulting in them struggling to eat enough. Such people may have restricted intake because of low interest in eating.
It is important to understand there may not be one reason why they reduce their food intake, it could be related to several of these reasons. Every single person is different, who has the condition.
All are generally characterised with the restriction of food intake. It is important to also add that this condition should not be confused with Anorexia and Bulimia. It has nothing to do with the size and appearance of a person.
Effects of ARFID.
One of the major effects can be that a person will need tube feeding if their intake drops so low that they are ill.
Even before this stage is reached, there is a negative impact on a person’s physical health as well as their psychological wellbeing. A person may not have enough energy because of their reduced intake and start to lose weight.
In children, this weight loss can lead to their overall growth being affected including their height. When you do not have an adequate diet because of eating a narrow range of foods, you may not get essential nutrients.
Being limited in terms of what they can eat often causes people to experience significant difficulties with their life. Their mood and day-to-day function can be negatively affected. Many people with ARFID find it difficult to go out or to go on holiday, and their eating difficulties make social occasions difficult to manage. They may find it difficult to make new friends or establish close relationships. There is an effect on their psychological needs as well as their health needs. When we go on holiday we have to carry suitcases full of my little one’s food with us to ensure she will eat.
Signs and Symptoms
Because ARFID is such a wide-ranging disorder it is hard to characterise certain types of difficulties. Some of the common signs and symptoms are as follows:
- Eating a reasonable range of foods but overall having much less food than is needed to stay healthy.
- Finding it difficult to recognise when hungry.
- Feeling full after only a few mouthfuls and struggling to eat more.
- Taking a long time over mealtimes/finding eating a ‘chore’.
- Missing meals completely, especially when busy with something else.
- Sensitivity to aspects of some foods, such as texture, smell, or temperature.
- Appearing to be a “picky eater”.
- Always having the same meals.
- Always eating something different to everyone else.
- Only eating food of a similar colour (e.g. beige).
- Attempting to avoid social events where food would be present.
- Being very anxious at mealtimes, chewing food very carefully, taking small sips and bites, etc.
- Weight loss (or in children, not gaining weight as expected).
- Developing nutritional deficiencies, such as anaemia through not having enough iron in the diet.
- Needing to take supplements to make sure nutritional and energy needs are met.
Treatment for ARFID
Due to the different forms of ARFID, treatment is not always easy. Help can be offered through a range of professionals.
At present ARFID has not been classified as an eating disorder. Regardless of this if you are worried about someone, then your GP will be able to make a referral to the relevant service. Local community eating disorder services do help young people as do Child and Adolescent Mental Health Services. (CAMHS), Paediatric services can offer help from dieticians, speech and language and psychologists.
Adults with ARFID may be treated by specialist eating disorders services or general mental health services. Hospital-based liaison work occurs if there is a chronic medical condition, as a result of ARFID.
Treatment is tailored to the individual and looks at the specific nature of the person’s difficulties. Treatment can also include evidence-based methods such as cognitive behavioural therapy and behavioural interventions such as anxiety management. On rare occasions, medication may be offered to limit anxiety.
If you believe you know someone with this condition then seek professional help, as the physical effects of poor nutrition can be long term.
There is nothing more heartbreaking than watching someone you love go hungry because they can’t eat the food available.
In the UK we are going into our second period of lockdown and I understand the anxiety this causes many. Panic buying is a natural reaction to this anxiety. However, we all know that essential shops will stay open. If everyone does their normal shopping there is plenty to go around. There hasn’t been a shortage to this point.
Have a thought when you are loading your trolley with food that you are stockpiling. Somewhere a person is starving with ARFID, just because you wanted food to sit on your shelf.