#MillionsMissing: 7 Days in Self Portraits with ME/CFS

After taking #MEAction’s photography workshop with photographer Lucia Doynel for #MillionsMissing, Terra Dumont produced these stunning photos as a glimpse into her life as someone living with ME/CFS. Terra spread this experience over 7 days, focusing on a different theme each day. See her wonderful work and accompanying commentary below. Click on any of the pictures to enlarge them.

Name: Terra Dumont 
Pronouns: she/her
Age: 33
Lives in: Christchurch Aotearoa/New Zealand 
Diagnosis: ME/CFS, PCOS, potential POTS

Day 1

Theme: Fatigue

My plan was to do a photoshoot a day to raise awareness for ME/CFS. Needless to say, given the mercurial nature of this disease, it took me a month to finish because most days I was too fatigued to do a shoot.

Day 2

Theme: New Passions

My mother is an artist, so I grew up spending a lot of time creating art. As a child and teenager I especially enjoyed doing realistic specimen drawings of insects, spiders and plants.
 
When I went to university I focused my energy on study, tramping, climbing, alpinism and environmental activism. Art more or less fell by the wayside. Then, on 18 November 2011, my 23rd birthday, everything changed. I came down with a small virus and never recovered. I was diagnosed with ME/CFS about a year later. Since then I have been relearning how to live my life. Re-engaging with art has been an important part of this as I am unable to work and my other pastimes are no longer possible for me.
 
Part of this journey has been creating a new relationship with art. Realism and illustration takes more concentration than I have and can trigger my anxiety when something doesn’t turn out like I want it to. As such, I have moved towards more interpretive forms of art such as jewelry, Lino printing, knitting and embroidery. 
 
Over the past few months even most of those artistic pursuits have been too much for me, so I have started beading. I really love it! 
 
These photos show me with my recent creations. They are all for sale.
 

Day 3

Theme: Identity Loss

This is something that I have struggled with a lot. My life was going awesome – I was the top student in my department at university, doing my Masters of Science in Ecology, while also excelling in my physical pursuits of rock climbing and mountaineering. Everything changed on my 23 birthday when I got sick and never recovered. 
 
It’s been a decade but I still miss the old me – strong, sharp, energetic, capable. I miss not being able to contribute to the welfare of the world through my work. I miss the feeling of warm rock under my hands. I miss the sound of crampons churching ice in the moonlight. 
 
It’s been a journey learning that my worth is not tied to what I can do. That I’m still important and worthwhile. 
 
The painting is by my mother from a photo of me near Empress Hut in Aoraki. 

Day 4

Theme: Mobility Aids

I started using a wheelchair in the past year. I wish I had pushed for it sooner! It allows my partner and friends to take me on walks and go places I would not otherwise have the energy to go to.
 
I love it because it allows me to spend more time in nature.
 
There is nothing embarrassing about using a mobility aid! If it would help your life get it and use it! 
 
This photoshoot also highlights my love of fashion! I love pretty clothes, jewellery, makeup and getting dressed up. I miss not having the energy to go out as much and thus not having as many opportunities to get all dressed up. The dress I’m wearing I’ve had for a few years and this is the first time I have had the opportunity to wear it.

Day 5

Theme: COVID-19

As a higher risk person it’s been hard watching the government choose to put removing small discomforts for healthy people over the well-being of vulnerable people like myself. The lifting of mask requirements at “non-essential” services is one such example. Now these places are no longer available for people like me. Exclusion of disabled people for the comfort of the healthy…  Yes masks protect you, but they also protect others!
 
It has also been hard balancing my physical health and the mental health of my dear friend who lives with my partner and I. She is really starting to feel the effects of isolation. Both health issues are very real! And finding the right balance is hard.

Day 6

Weight and Body Image

This is not a “before and after” – All photos taken today. It’s a visual depiction of the conflict in my head between loving my body and being uncomfortable with it. 
 
Loving your body is hard when it lets you down every day!
 
People with ME/CFS and other chronic illnesses or disabilities often experience weight changes – gain or loss! These can be very emotionally challenging, not only because our society is appearance obsessed, but also because it’s one more thing your body is doing that you have little control over! It is also a very jarring reminder every time you look in a mirror of how much your body has changed. 
 
I’m about 10 kg heavier than before I got sick. I used to be thin and muscular. Now I’ve got swishy bits! They still feel weird and foreign and wrong even though it has been years. I don’t feel and look like “me”. 
 
Today is actually the first day in 4 months that I have weighed myself. Im just not doing well enough currently to try to even think about loosing weight. Gaining weight is hard when you can’t exercise and reducing calories intensifies your symptoms. 
 
Loving my body is definitely a work in progress for me!

Day 7

Theme: Enjoying the Little Things

Being chronically ill forces you to slow down! Which is mostly very frustrating – but does have the silver lining of making you very grateful for the little things in life like relaxing in the garden and the beauty in nature.
 
I used to appreciate nature by going for long tramps (hikes in NA lingo). Now I do so by spending time in my garden, and when I’m well enough, getting pushed in my wheelchair through parks. I’m appreciating things at a smaller scale and slower pace. But the beauty is still there. 

Q&A

What made you decide to do this project? What inspired you from Lucia’s photography workshop?

I have had an Instagram account for a few years now where I share my life with ME/CFS (@musings_of_brainfog). My selfie skills where pretty limited, so when I saw that MEAction was hosting a self-portrait workshop I immediately signed up! I wasn’t able to join the workshop live, so I watched the replay. I learned so much from Lucia Doynel and decided that I wanted to use my new skills to raise awareness for ME/CFS Awareness Day. Hence my project was born! 

How did this project affect you?

It definitely increased my confidence in taking self-portraits! It also precipitated introspection, especially the body image shoot. It made me confront my relationship with my body in a way I had not explored before. 

What did you learn from doing this project?

I learned how to use multiple new photography tools including Frame Grabber, Lightroom and Snapseed. Grabbing images from video was revolutionary for me – I had not realised that it was so easy to do and works so well! It opened up so much photography potential for me! 

Anything else you’d like us to know about yourself or your project?

On November 18th, 2011, my 23rd birthday, I came down with a small cold. I have yet to recover. I spent about a week in bed, once the symptoms passed I still felt exhausted. Up until this point I was doing great! I loved my life! I had the top grades in my department at University and was half way through my MSc thesis in Ecology. I was also excelling in my physical pursuits of alpinism and rock climbing. I had just returned from a 3 month climbing trip in Europe. 

I somehow finished my five months of field work that summer. I had to acquire the help of my mother, friends and others that I begged into being field assistants. Without them it would have been impossible. During this time I kept expecting to get better, so every time I started feeling well I would try to do things. But instead I became unable to even care for myself properly on a daily basis let alone climb or write my thesis.

In addition to feeling exhausted all the time I had really bad ‘brain fog’, could barely concentrate and suffered from substantial memory loss. The doctors at university tested me for everything and found nothing. I was diagnosed with laziness. I had started researching the medical literature myself and figured I had Chronic Fatigue Syndrome (ME/CFS). The low recovery potential from the disease made me want to ignore it but I no longer could. The doctors could though. I went to four before I found one that was willing to listen and help me! 

ME/CFS is a very poorly understood disease. It is a diagnosis of exclusion – if you have the symptoms and nothing else seems to be causing it then you get diagnosed with it. They do not know what causes it or what is wrong in the body. Theories include mitochondria malfunction, a virus, or an auto-immune disorder. There is no known cure. I had to learn to live in a totally different way.

That was a decade ago. I managed to recover enough to finish my thesis and start working at my dream job. Sadly a year or so into it I relapsed and had to quit. I tried part time, flexible, home based work but even that was too much. I have now been unable to work for around 5 years. 

My health has ebbed and flowed over the years. Sometimes I’m able to do some physical activity- I even managed some sport climbing – other periods I’m stuck in bed. The past two years have been especially bad. I have spent a lot of time confined to my bed or on good days on the couch! 

Many thanks to Terra for sharing this wonderful project with us. Want to see more of Terra’s work? Visit her website, her Redbubble page, or follow her on social media: @Terra.Arts.Aotearoa. 

We love when people in the ME community express their power through art. If you’ve created something you’d like to share, drop us a line at [email protected] We would love to hear from you!

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1 thought on “#MillionsMissing: 7 Days in Self Portraits with ME/CFS”

  1. Bernadette Morris

    You are wonderful, beautiful and inspiring. Crafts and arty stuff in any form is lifesaving. I love what you do. 👙💃🏻🖼 🦽 📷💚

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