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Notes from a research study that I was involved in - me and a panel of other eating disorder survivors formed a panel in collaboration with researchers at UCL to create a research study looking into the impact of eating disorders in secondary school

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Notes from a research study that I was involved in - me and a panel of other eating disorder survivors formed a panel in collaboration with researchers at UCL to create a research study looking into the impact of eating disorders in secondary school

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Here we were gathering our ideas from our experience about what may possibly trigger EDs in school and suggesting solutions. This and other input from researchers/ others with lived experience will go towards a survey following those with EDs, their peers, teachers and headteachers in secondary schools over the country. The data from the survey over a number of years will be presented to the government who can look into implementing changes to support and prevent eating disorders

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Notes on a research paper showing the benefits of using graphic novels in medical teaching

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Notes on a research paper showing the benefits of using graphic novels in medical teaching

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notes on graphic novels in med teaching, part 2

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notes on graphic novels in med teaching, part 2

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definition of graphic medicine - I wrote about this for my CHS essay and think that I might write my dissertation about it!!

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definition of graphic medicine - I wrote about this for my CHS essay and think that I might write my dissertation about it!!

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Notes on use of graphic medicine in relation to Alzheimer's - there is a graphic novel called Aliceheimers which has been critically acclaimed for its portrayal of the condition

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Notes on use of graphic medicine in relation to Alzheimer's - there is a graphic novel called Aliceheimers which has been critically acclaimed for its portrayal of the condition

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Evaluation of service of those who have FND in the NHS (2021) - depressing but shows how much stereotypes about FND need to change!!

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Evaluation of service of those who have FND in the NHS (2021) - depressing but shows how much stereotypes about FND need to change!!

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Link to 'Not There' - a graphic Novel about functional seizures

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Link to 'Not There' - a graphic Novel about functional seizures

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‘Not there’ a graphic novel about functional seizures – Functional Neurological Disorder (FND)

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‘Not there’ is a graphic novel about coming to terms with having functional seizures as part of FND. The work was created by Language and Cognition Fellow Gavin Inglis in partnership with Edinburgh artist Fin Cramb as part of the Beyond Walls Art and Therapeutic Design (ATD) programme for the Department of Clinical Neurosciences, Edinburgh.

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analysis of 'Not there' - a graphic novel about FND

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analysis of 'Not there' - a graphic novel about FND

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Comparative analysis of 'What is FND?' - a infographic animation on the face of the website neurosymptoms.org

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Comparative analysis of 'What is FND?' - a infographic animation on the face of the website neurosymptoms.org

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I thought these depictions of FND were particularly unpleasant. The visual depiction of the loss of bladder/bowel function that some with FND experience was hyperbolic - the script stresses the word 'even' ('it can even cause problems with bowel function'). In a disorder which causes seizures, the loss of normative bowel function really isn't the worst symptom and I think portraying it with a silly character only adds to the embarrassment and shame that people already feel about this symptom.

I also didn't like the fact that the doctor was portrayed in a halo of light - as someone who spent about 7 years being misdiagnosed, the doctors were not my saviours.

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This is the link to the FND site the doctor gave me. It's got lots of information and it's quite stressful

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This is the link to the FND site the doctor gave me. It's got lots of information and it's quite stressful

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Functional Neurological Disorder (FND) - A Patient's Guide to FND

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The charities for FND provide a vital and unique voice for patients, run by patients and volunteers. Health professionals and FND groups are working together to advocate for the condition

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I thought this was a really lovely portrayal of someone with a limb difference (graphic novel)

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I thought this was a really lovely portrayal of someone with a limb difference (graphic novel)

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This got me thinking about portraying disability as part of a character's backstory. The novel does a really lovely job of making the plot nothing to do with the character's disability, but still making disability part of the character. Part of this was portraying the character's history with cancer and I wasn't really sure how to feel. Part of me was like: 'this detail is irrelevant to the story, we could know about the character and her disability without knowing about her specific medical history'. But then, knowing about her cancer definitely provided another level of insight to the character, because her disability is a big part of her, and particularly her having had cancer massively effected her relationship with other characters in the book. I guess having both types of representation is important...

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I am a little bit obsessed with Mickey Atkins...🙇‍♀️🙇‍♀️

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I am a little bit obsessed with Mickey Atkins...🙇‍♀️🙇‍♀️

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(she's a disabled, body-positive, research-informed licenced therapist and all-round ICON)

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https://www.youtube.com/watch?v=Z2szQz-Vx1s&list=PLxZ0godzsvmvSv1_cDX6Q9F1EfO0cVX6q&index=19

I'd really like to make a reply to my 'letter to my future self' at the end of the year...

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I went into a bookshop in the summer to look for books about disability and this is the only book for adults I could find...

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I went into a bookshop in the summer to look for books about disability and this is the only book for adults I could find...

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Before I became disabled I worked in a disability centre. I began looking for sources of media outside of traditional academic research in order to deepen my understanding of the kids' disabilities. I was specifically looking for a book by a disabled person which showcased their personal perspective on being disabled and this is the only one in the whole shop. I noticed that there was a fair amount of children's books which at least featured disabled characters, but there is a massive gap in the market for adult fiction in particular...

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I started listening to this before I went to France to be an Au Pair - one podcast did not qualify me to parent!! Having said that it's a great insight to gentle parenting and I still listen to it :D

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Firstly, I knew it was important to find people who could support me so I reached out to Nina at the start of the year

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Firstly, I knew it was important to find people who could support me so I reached out to Nina at the start of the year

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I had to organise LOTS of scary doctor's appointments:

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I had to organise LOTS of scary doctor's appointments:

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blood tests / ECG

general review

more blood tests

discussing results / next steps to diagnose POTS

appointment to do with my gait deteriorating

appointment post-hospital, FND suspected

second 24hr ECG

mental health appointment

neurology diagnostic review

MRI / CT scan

mental health services assessment

GP medication review

Initial physiotherapy appointment

clinical physiology appointment

cardiology review

second physio appointment

neurology review

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meetings every 2 weeks with Nina (this was absolutely not a chore, genuinely needed to keep me sane!!)

starting the conversation with disability support services

making initial fun funky functional seizures doc

meeting with Paddy and risk assessment

holistically adding to the Functional Seizures advice and guidance doc

sending off my diagnosis documents to disability support services

filling in the SOSN form

meeting with Sam and Nina

Discussing options with Sam post flare-up

adding more information to Fun Funky Functional Seizure Doc and checking in again with Nina

meeting disability advisor

Meeting with level 6 team

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Have found this workbook amazingly helpful! It also really helpfully references all of the sources its used to help craft the exercises, would like to look more into these for my dis research maybe

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Buy Reset & Rewire: The FND Workbook for Kids & Teens by Carey, Katie, Watson, Meagan (ISBN: 9798218232047) from Amazon’s Book Store. Everyday low prices and free delivery on eligible orders.

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re-take without fold!

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This was the hardest brief for me to do in terms of the fact that my health was at its worst - I went to hospital halfway through. I was super lucky that I was in a group of all disabled people who were super lovely and understanding. I tried to focus my work primarily around building a solid research foundation as I could do this from home. For the final piece I was in charge of the colour and layout, which again I could do from home.

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I spent the whole summer unsure of how to approach this project so made a whole research sketchbook, but eventually decided to make a piece about developing a chronic illness. It was a message to myself, but I also used it as a medium to communicate with friends and tutors about what was going on in my life. I hoped that the book would inspire empathy and provide a fresh and hopeful perspective on disability that other able-bodied people might normally not have access too

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I had to make a really hard decision on this project - I had to make the choice to not go to Vintage Headquarters after our group was selected in the top 10. I really wanted to go, but my health was in a really fragile place and there was no guarantee that I'd be well enough to go, and I knew it wouldn't be fair to bail on my group at the last minute. It also wouldn't be fair to myself to head to London knowing that it would be too much and face the possibility of being really unwell and struggling to get home. We were given the option to do it online, but I felt it was important that the other members of my group had an equal chance to participate as all of my classmates. So, although it was really difficult, I decided to take a step back a few days before going. This meant that there were no surprises on the day, and it also allowed me to watch our pitch as an audience member and give feedback before the others pitched it

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I decided to make a physical portfolio ready for my internship at Hay Festival - it is an arts and literature festival so I think having a tactile book would be the most familiar medium for the audience there

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A logo I made for my dad's string quartet

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A logo I made for my dad's string quartet

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I read this paper by John Miers after I wrote my essay - I enjoyed his critical discourse around portrayal of physical sensations / symptoms of chronic illness. Thinking of maybe focussing my essay on depicting symptoms through illustration / animation

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I read this paper by John Miers after I wrote my essay - I enjoyed his critical discourse around portrayal of physical sensations / symptoms of chronic illness. Thinking of maybe focussing my essay on depicting symptoms through illustration / animation

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I really enjoyed this comic by John Miers - it linked to a paragraph I wrote in my essay about stigma around bowel function

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I really enjoyed this comic by John Miers - it linked to a paragraph I wrote in my essay about stigma around bowel function

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Collaborative drawing with Ricardo Vargas-Rios during a Wednesday life drawing session 

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Collaborative drawing with Ricardo Vargas-Rios during a Wednesday life drawing session 

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Notes from an interview I did with the children at forest school (Brief encounters)

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Notes from an interview I did with the children at forest school (Brief encounters)

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This helped us work out what icons to make and how the children represent their feelings

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collage I made of our group for The Pitch

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collage I made of our group for The Pitch