Healthcare Costs - Eating Disorder & Other Health Conditions

My name is Coco. I’m 27 years old from Brighouse, West Yorkshire in the United Kingdom, and in the month of June I will be covering 500 miles through rowing, cycling and walking to raise the money needed for my healthcare costs.

I am also doing this with the hopes that my community and the people in my life can come together and help me on this occasion, whether it’s a small donation, if your a business owner having my challenge displayed on your business window for people in the public to see, to share this, to send to any connections you may personally have, to send to people you know, or to come up with idea’s of your own to help contribute to this challenge of mine whether it’s your own fundraisers or sharing my story on your social media platforms to the people you know or again in the walls of your businesses for your customers to see.

For me to do this is something I do not do lightly and it is hard to do. I’m currently at a dead end with where I go moving forwards financially with getting myself well physically and mentally and getting back on my feet. I have been at a place in my life for a long time where I am struggling to move forwards and actually live - without pain or discomfort, physical and mental challenges. I've been unable to get any help on the NHS, I've also written to my MP numerous times with no response from him or his team, and I have no financial way of getting my health issues dealt with.

My life since 2016 has been extremely challenging and at times unbearable, I have been a lot and I have received little support from the NHS in the UK and any other resources. I really don’t know what to do anymore with my life, and I would like to share everything I’ve been with as to why I’m trying to find support financially on here. Since 2016 l've had a lot of health issues and life experiences that have been extremely challenging. In January of 2016 l became very unwell one weekend during my final year of sixth form college which resulted in me spending my final year at home as I was too unwell to attend, and work from home and attend sixth form only for exams. I was later in the year diagnosed with functional dyspepsia - which is a gastrointestinal disorder that results in recurring symptoms of an upset stomach that have no obvious cause. I was also diagnosed with irritable bowel syndrome and gastroesophageal reflux disease. Throughout this year I began to experience a really unhealthy relationship with food, and as the years have gone by since then, I now have an eating disorder called avoidant/restrictive food intake disorder. This is because as I was experiencing many symptoms in my stomach and bowel with food, I began to restrict myself from certain foods that I thought didn't agree with me, and as time has gone on I have become extremely restricted with what I eat, how I eat and when I eat. For an example I don't eat outside of the home, and I always eat at the end of the day in an evening. For an example, I went to see Taylor Swift at Wembley back in August 2024, and I didn't eat until after the concert once I got back to my sister apartment, so l was awake around 10:00 that morning and I didn’t eat at all until we got back home at around 01:00 in the morning. This is also mixed massively with my mental health as I also have emetophobia - a phobia of being sick, which I began to experience when my health issues began in 2016.

In April of 2017, I came out as trans, which was a new chapter for me and my life, and later in 2021 changed my name from James to Coco. And then in May 2017, I was at Manchester Arena on the night when the terrorist attack took place at Ariana Grande’s concert. In May of 2018, I began to experience panic disorder, and extreme anxiety, and after fighting through it that year, in 2019 in the autumn I became agoraphobic, and lived inside my bedroom pretty much and didn't see anyone besides my immediate family until I began exposure therapy at the beginning of 2022. I have now overcome my agoraphobia, even though some days are hard and I deal with anxiety, I have beaten it.

During my recovery, I began to work hard with exercise and fitness. Throughout high school I became overweight, and as I got older I become more obese. As I was going through recovery with my agoraphobia, I began to work out and try and make changes with my food and I lost just over 100 pounds. However, as I am now at a healthy weight I have been left with a lot of loose skin around the stomach, which is now feeding into body dysmorphia, along with my gender dysmorphia. Along with this, I have began to experience a lot of physical pain due to the intense feeling of this extra skin hanging in my lower stomach and it is causing physical discomfort daily. I worry mentally this is also now feeding into other eating issues because I now calorie count and work hard with fitness doing at least two hours a day of intense workouts because I am doing anything I can to make this loose skin go away, but it won't. Because of my eating disorder, my stomach conditions flare up frequently and it is preventing me from getting back into work, living my life and feeling my best.

I was due to start university back in September 2023 studying international politics in Paris, which I had to defer at the time due to my health issues to 2024. I went to the city twice last year and to the university to look round. Whilst I was there I struggled badly with my eating disorder and not being able to eat much, which made me realise I wasn't ready to do this, so I postponed my place until September 2025. However, I have had to defer yet again because my health issues are still in the way because I haven't been able to get the help I need. I have also kept an open mind of studying at university elsewhere in the UK, near home or studying at home, but I am not fully well to take on studying a degree right now so that isn’t an option either.

Because of my eating disorder, my iron levels are not in a healthy range, and medication isn't helpful for me because it absorbs in the stomach and upsets my stomach which then flares up my conditions. Iron levels are meant to be on a range of 22 to 322, and over the last few years mine have ranged from 13 to 18. Back in March I had a blood test and they had dropped down to 12. I explained about how I couldn’t do medication and asked if we could do an iron infusion or injections, but I was told I cannot get an iron infusion because I am not as low as the requirements that the NHS ask for. Every day I go through feeling very fatigued, headachy, my legs get warm when I'm active, I get dizzy spells and my eyesight has deteriorated. They told me all I could do to get my iron levels up was working on it naturally with nutrition - which I cannot do because I have an eating disorder and as you can tell all of this is just a vicious circle that goes round and round and doesn’t stop.

I have also the last two years - nearly three years resulted with hair loss. After waiting a year on the waiting list on the NHS to see a dermatologist, I was told there wasn't a medical reason and they couldn't do anything to help. My hair is everything to me because I am trans, and it's become really difficult to feel and look confident as a trans woman especially because of this issue. The issue with my hair is most likely linked to my low iron levels, which I have because of my eating disorder. I began in the new year to wear a clip in ponytail extension to try and boost my confidence, but this is further damaging my hair, and after seeing a few different specialists to get advice as well as hairdressers, their outcome/advice was a wig would be the most beneficial thing to get so my hair can rest from any products being used and not being tied up and can heal and begin to get healthy again. And then back at the beginning of 2024, my mum on New Year's Eve was away in Belfast with my stepdad, and she had a heart attack and went into cardiac arrest, and luckily after spending nearly a month in ICU there, she was brought back home to hospital and later returned home.

With the loose skin on the stomach, I am not eligible for surgery, even though I am in physical and mental discomfort I don’t meet the requirements on the NHS to fund the operation. With my eating disorder, the service that deals with referrals where I live do not treat my eating disorder and I also do not meet the requirements for treatment because I am not yet underweight enough. I was covered for a few years under my dad’s healthcare plan through his work so I could access mental health support and I got a psychiatrist and psychologist, however we didn’t know that I was able to be covered until 2021, and the insurance would only cover me until I was 25, and I am now 27. With the issues with my hair, I was told after waiting a year on the NHS to see a dermatologist there was not a medical reason causing this issue and that they cannot cover any further treatments for me, as it would be classed as cosmetic surgery/treatment. With needing therapy for my mental health, including my eating disorder, I cannot get as explained above. To just even get basic therapy like CBT therapy, on the waiting list through the NHS it is a two year waiting list - at least, and I need more than just CBT. And as already explained, I cannot get help on the NHS for my iron levels.

I am also waiting for an assessment for autism which the waiting list is 12 - 18 months for the first appointment. In the past with therapy, it’s been brought up a number of times that I could be autistic, and that could explain some of my attitudes and relationships with food as well as other things in my life. It’s been very challenging when having therapy discussing my relationship with food whether some things are because of my eating disorder or if they are more of an autistic trait, and without being diagnosed it’s challenging to move forwards.

Because of my health I am unable to commit to work therefore apart from the times when I was completely unfit to work I have done freelance as well as volunteering. Without the access to the help and resources I need, I really am not going to ever get better, to actually have a life of my own, to ever work, and that isn’t fair, because I am capable of making a recovery, I’m not terminally like this, but I cannot get the access to the help I need.

I worked out the costs with the following:

1. the therapy and mental health access for my eating disorder and mental health issues - with my psychiatrist, getting myself the number of professionals - a therapist and psychologist who can help me overcome my eating disorder and other mental health obstacles, costs for a private nutritionist/dietician as well as possible inpatient care costs

2. support to cover surgery and aftercare to deal with the loose skin on my stomach to resolve the pain and discomfort I have daily

3. to be able to buy a human wig so I can feel confident with my hair and appearance as a trans woman - as well as be able to see a dermatologist privately outside the NHS and get the answers, care & treatment to get my natural hair healthy and growing again

4. to get an iron infusion so my iron levels can go back up - which I am needing one incredibly urgently asap and it is possible I may need to have more than one infusion depending on how the first one goes and how my body takes it

After working out how much I would need to deal with all of the above in much depth along with covering past debts I’ve also had because of my health, it has come up to between £70,000 to £75,000 (94,029.60 - 100,743.49 USD).

To raise the money needed, I will be completing 500 miles throughout the month of June through rowing, cycling and walking. I will be posting daily updates on my instagram & substack as well as on my facebook with how I'm getting on along with screenshots of my tracking for each task from my apple watch device. Both my instagram and substack usernames are: thecocorome

& lastly I hope and even though we all know our healthcare system has been struggling to say the least for a long time, that we do more action to make it more accessible for everybody in this country, even if that’s writing to your local MP demanding change to come, because no one should have to be in the position to not get the healthcare they need, especially in the year 2025 and in the united kingdom, it’s inhumane to say the least to be in this position.

Thank you for spending your time reading through this if you did, I’m sorry I rambled, I really truly appreciate it. Thank you in advance to anyone who supports me throughout this, & thank you to my family who have been through this long journey with me as I know it’s not been easy and it has been very difficult for us all individually, for anyone who would like to help spread the word in any way as well as any business owners I know who want to support me in anyway they can please feel free to reach out to me, I have also made posters with the information about everything that I can print off and deliver to you or email it across to anyone,

Please don't hesitate to reach out for my contact information if you know of any organisations, charities or foundations that come to mind that you'd like to recommend. Also, any business owners who want to support me in anyway they can please feel free to reach out to me, I have also made posters with the information about everything that I can print off and deliver to you or email it across to anyone, please just message me on instagram for my contact information as it won't let me share my email or phone number on here!

Thank you again,

Sincerely

Coco Rome Owens xo

Instagram: thecocorome

Substack Account (Where all tracking information/evidence is posted daily): https://open.substack.com/pub/thecocorome/p/500-miles-in-june-tracking-data?r=3z2kj1&utm_campaign=post&utm_medium=web&showWelcomeOnShare=true

Update: I completed my 500 miles in June challenge. You can find my full response to the challenge on my instagram and substack account listed on my fundraising profile here. This page will be left up for the foreseeable for any future donations from anyone who is able to contribute and help me, thank you to those who donated and supported me during my challenge in June xo