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Kearin Green

I have ADHD and ARFID: this is what it’s been like trying to access support

Written by Kearin Green

Trigger Warning: this article contains mentions of suicide and restrictive eating behaviours.


I had originally planned on writing an article regarding NHS waiting lists for mental health, after seeing an article which reported patients were beginning to use emergency services to access mental health support, due to extensive waiting lists spanning as long as a year. I had reached out to Student Wellbeing Service to get a statement from them, something they were happy to do and which I thanked them for. However, I decided instead to take a personal approach. In this article I tell my own story of living with mental illness, learning of my neurodivergency, and dealing with NHS services for the first time.

 

I have been reading Elizabeth Wurtzel’s memoir Prozac Nation, regarding her experience with depression from the age 11, and her battle to find a medication balance which would combat her illness and keep her alive. It has resonated with me extremely: our family dynamics have a few similarities, she often speaks about her Jewish upbringing in New York, and a few of her experiences of Jewish girlhood hit home for me. The thing which struck me the most was her experience being a student at Harvard in the mid 80s, and attempting to access mental health support. In 1987, she summarised her situation:


In the meantime she felt compelled to remind me that if I were ever feeling suicidal, I could go to the hospital emergency room and check myself in. It seemed we were still operating with the same old rules: once you are desperate enough to be instituionalized, there is help available, and insurance to cover the cost; until then, you’re on your own kid”.


As I read this in bed, I had to put down the book and look up at the ceiling, frustrated. I was quite in awe of what I had just read: not just because it wasn’t an ideal situation for Wurtzel, but specifically because she was around my age when this happened to her. I didn’t understand how 36 years later, this was still the situation for people living with mental health issues.


Kearin when she had been battling with eating for two months now and was denied access to a dietitian. She would develop anaemia in the upcoming months. Photography by Ellie Simpson.


When I started university at Portsmouth in September 2021, I had recently moved to the UK from South Africa and believed myself to be an individual with an anxiety disorder. I didn’t think that, in a situation where that anxiety hit a plateau, I would have to battle to get help with it. By the time I was into my fifth month of study as a film production student, I had figured out with the help of a friend that I may have ADHD. I asked my parents who confirmed I had been diagnosed when I was 3 years old and had been on medication to help with it until I was 15. With this revelation came a dramatic unmasking that I am still dealing with to this day, and sometimes wonder whether it’s going bury me alive in the process.


In March of this year, I developed anxiety so fierce that it began to affect me physically, and for an extended period of time, I lost my entire appetite and was given emergency medication by my GP to allow my body to consume food. Later on, I began to have issues with nausea, textures of food, and a dislike towards food and eating. Eating became stressful, deciding what to eat and choosing food became so overwhelming that often I chose not to eat at all. Not only did I start to have problems with executive functioning, but I became restricted by food placed right in front of me if something was ‘off’ about it. My problem, one that was extremely new and strange to me, didn’t go away; despite suggestions by my GP that once I went on my summer holiday, I would become more at ease.


Two months down the line, I still wasn’t eating enough and continued finding cooking and eating a stressful process. I sent a request to my GP to see a dietitian, despite knowing I wouldn’t see one for ages if given the opportunity. I was turned down and recommended a health and wellbeing coach that, after three sessions, made me feel like watching paint dry would’ve improved my situation more. The mental health nurse who didn’t specialise in eating issues showed me a very depressing email that I had been rejected from eating disorder services in Portsmouth and gave a few book recommendations from 1995 that I wanted to burn in a communal fire pit to fix my problem.


My other ADHD symptoms, such as sensory issues with noise, restlessness, irritability and impulsivity, began to worsen. I was lucky enough to be given a mentor by ASDAC, but found myself in a difficult situation when I was told I would have to receive a diagnosis again in the UK if I wanted to consider medication. As I remained unmedicated and with limited support, I came back from the summer holiday with eating patterns that surprised my housemates and began losing my temper over small things, battling to control my emotions and lacking hope that I was ever going to receive help for the eating problem I had no idea how to explain.


I was given the chance at the beginning of term to see my counsellor at Wellbeing weekly during this difficult time, to try and make some changes before university went back to being serious. In that time, I developed brain fog and struggled to maintain focus in sessions, and would go on the next week to nearly pass out in the dear counsellor’s office. I soon found out I had anaemia caused by my lack of eating- or, as my GP insisted, because I am a vegetarian, despite the fact I have been one for 3.5 years and never encountered these problems until I had trouble eating.


I applied to Portsmouth Eating Disorder Services again and was rejected for the second time. Instead, I was given a silent diagnosis of ARFID (Avoidant Restrictive Food Intake Disorder), an eating disorder which often occurs in autism and ADHD, in the form of a booklet emailed to me. The diagnosis didn’t surprise me much, but it did bring a sort of melancholy over me- the reason being that I knew that I wasn’t going to get the right help for it. It was just a stamp of pity without any solution.


As of December, 11 months after finding out about my ADHD, I have (re)received my diagnosis through Right to Choose- yet I am still on a waiting list to receive medication to ease my symptoms. I am on iron supplements for my anaemia and have made the decision to access and pay for a dietician in my home country after being refused one by my GP in May. However, at this moment I do feel like I am improving and getting better, and I feel beyond grateful for that. I do feel extremely lucky because not everyone would have been able to access help the way I did. It is a privilege, but it’s also shocking that it’s happening-and it’s not a minor occurrence. This is happening all the time.


I’ll be honest in saying that my experience with accessing these services has been unbelievably disappointing and has made me lack faith in the system. It’s not a statement that is directed personally at anyone who works in these NHS services, but rather at the individuals involved in making these services available to people by giving them funding and resources to help people. An effective and accessible mental health system, one for those who couldn’t afford to spend hundreds of pounds on their mental health a month even if they wanted to, is currently not available. Instead, all we can do is wait, get more ill, and get so ill that we end up in a place which could have been avoided and which could be irreversible.


Personally, I believe the government needs to be focusing on looking after people rather than making the rich richer. I believe getting sick and unwell shouldn’t feel like a punishment or burden. I don’t believe services should be so difficult to access that a person suffering from a not-as-common eating issue develops hopelessness and melancholy on top of their problems, as a result of the hollow loneliness this journey has provoked.


I have been let down by friends in this process due to the effects of my illness and my inability to control my ADHD symptoms, which I am battling to regulate without medication. But I also have been nourished by people who do care and say that, although our circumstances differ, they get it.


I would just rather NHS mental health services had the funding and resources, and have the government care about something actually important. I want to be the friend that cares, rather than the one who tells you, as a person in their darkest place, that they are unable to help you.


 

About The Author: Kearin Green (she/her)


Hi, I’m Kearin and I am the magazine’s Welfare Officer! I am a second year Film Production student and am currently committed to using our support platform to give mental health a louder voice at our university. I also write about cinema, political issues, humour pieces and whatever comes to mind.



(This piece was edited by Amber Turner-Brightman)

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