Why I Did Photo Shoots to Raise Awareness for Arthritis as a Tattooed Single Mom
When I was struck with rheumatoid arthritis at only 29, I was introduced to what living with a chronic illness is like. Not only was it chronic, it was also invisible, painful and exhausting. I did not understand arthritis at first, even though I was diagnosed with two forms in a year and a half, before my 31st birthday. My son was only 3 by my second diagnosis and getting more rambunctious, and I was getting sicker.
When arthritis introduced itself to me it destroyed the life I once had; the esthetics career I was so good at and paid the bills with, the rockstar boyfriend I loved and admired, then my business, my popularity, my energy and being able to drink with my friends at concerts. I had to say goodbye to so much of my old life and was introduced to life with arthritis.
Friends and family didn’t understand what was happening to me even though I was stressing the horrific events I was going through in my body, my mind and my life. I had to adjust to living with a chronic illness.
I was quite popular in the music scene and many didn’t really understand what was going on with me, especially when I had to close down my metal merch business, my second job destroyed by this monster. I fell into a deep pit of depression and the thoughts of anxiety were lashing out at my heart nonstop. I was overweight and incredibly insecure. I wanted to hide my illness and hide myself. I wanted to escape from myself and I tried, in many ways – including attempting to take my own life in desperation to end the struggling. I didn’t know how to look forward, onto the next step.
People could not see my struggling on the outside, except when I started to use a cane for a brief period. I was told, “It’s only arthritis.” When people could see I was disabled, I was definitely treated with a lot more respect. Disability seats were given up for me, without the tiny hand I hold that usually guarantees me a spot, or telling them to move for him. People asked me about what happened to me, expecting me to say I had some injury and I would be fine in no time. I would tell them I have rheumatoid arthritis, and was often asked, “What is that?” or received an ignorant response when I told them I have a severe, debilitating illness, which they didn’t understand.
When people see me, they see a woman in her early 30s (or, as I often hear, I look even younger than my age). I surprise them by telling them I am a mother of a young child. And I definitely surprise them by telling them I am disabled with rheumatoid and osteoarthritis. I often hear I am “too young for that” or “I look great” or the infamous “but you don’t look sick!” It’s very real. Sometimes I hear no response at all.
Many of the responses I do get have taught me I live with a disease that has a major stigma behind it. Sometimes I wonder if my appearance surprises them, as I am heavily tattooed. Is there really such a stigma about people with tattoos still? I don’t know – I’ve got other things on my plate to worry about than if someone doesn’t like them.
I find arthritis to be such a complex and confusing disease to explain and to live with. There is pain and there is fatigue, side effects of the harsh medications, the triggers, the stigma and especially the mental health issues that can come with it. Arthritis really introduced me to depression and anxiety. I decided I had had enough of the self-pity and struggling, noticing the effect the disease was having on my mothering, as I had to take weeks off from my son to adjust to side effects, pain and sickness.
When I discovered that chronic fatigue is a nightmare to live with and definitely doesn’t match the energy of a toddler boy, I decided to fight like hell. I lost weight and started to show arthritis what I was really made of – along with everyone else who doubted me. (By the way, every one pound of fat lost is equivalent to taking four pounds of pressure off your joints – booya! This was helpful since I am definitely nowhere near remission and onto my second biologic.) I’ve become passionate about promoting a healthy lifestyle since. But there is something else I have found great passion in promoting.
I introduced myself to The Arthritis Society when people started to notice my ramblings online about the disease. Knowing a lot of the attention was based off my appearance and my involvement in the heavy metal music scene, I figured why not see what I can do with this and go further? I was inspiring people all over the world and it felt good. I finally felt good again.
Musicians in some of my favorite bands since I was a young girl were noticing the fight I had entered and how well I was battling it. I was inspired by the help I did receive from a gofundme and benefit show my friends put together, but also deeply hurt by the backlash I received for needing help through major illness. I knew people could be mean, but that mean?
I hated the idea of only myself receiving help though. I knew arthritis was such a common disease, and there were so many others struggling just like I was – but why did so many people not understand it? So what I did was raise a ton of awareness for arthritis in the hopes that some people won’t be so ignorant.
I wanted to take this further and started to think of crafty ways I could raise awareness. I became an Ambassador with The Arthritis Society, who love my image as a heavily tattooed woman with a young son – the strong single mother – and my story. They admired my writing and how I was battling the disease. They also believed in me when I really didn’t.
Finding something I could do and excel at, even though I was living with chronic illness, was exactly what I needed. When I met with The Arthritis Society we had a conversation about how the disease is so misunderstood by so many, yet so common. They listened to my story and my frustrations of how I am a single mother trying to get by in the expensive city of Vancouver, BC with this disease as well as my questions and concerns.
I learned I lived with a disease that has a harsh stigma behind it. Arthritis needs its time in the spotlight, and I realized this by learning the cold, hard facts about the disease I was living with. One that particularly struck me was that children can get it – someone the same age as my son or younger. I learned 4.6 million other Canadians also have the disease, so I wasn’t that uncommon, but I had a voice and an image I knew I could use for the greater good.
I had some photos taken by a professional photographer when The Arthritis Society requested more images of me and my son. I was interested in blogging and setting up social media outlets for myself. The Arthritis Society encouraged me to pursue this, but I needed to create the resume. I began volunteering as often as I could. I wanted to show what living with pain and the invisible illness was like. I wanted to expose myself and the naked truth of arthritis. I wanted to show pain and fatigue but in a sexy and artistic way – in my own way. The Arthritis Society asked me to help make arthritis sexy and in the spotlight. But how in the hell do you do this? One step at a time, with arthritic speed, a few great ideas and a few not-so-great ideas. The main idea was to not give up.
This landed me on TV and The Daily Hive, promoting the Walk to Fight Arthritis. I have never had a prouder moment than when I stepped up, despite my anxiety, and went on live TV for them – really early in the morning too! (If you know anything about arthritis fatigue in the morning, you’d know that wasn’t easy!) It felt damn rewarding someone wanted to use my image for something so major after how low I had felt about myself, and especially after being targeted by bullying numerous times throughout my life. I knew I was doing something far bigger than just for myself.
I am amused that my tattoos, which so many seem to have a stigma against, are helping me raise money and awareness for charity, and are not just for my own vanity. My tattoos are personal and make me feel beautiful on the outside when inside I feel disease destroying my body. They are definitely hard to afford now and have even more meaning to me, despite some unfinished or no longer my cup of tea. My tattoos aren’t holding me behind, they are helping me move forward. I get to be myself.
So here I am, the tattooed arthritis girl, and this is my take on pain and fatigue. I am nowhere near done – in fact, I have only just begun. It was one of my goals to write for The Mighty and I am proud they too wanted to use my image and writing. What can I do next? I will not let arthritis cause me to give up again.
“Pain” photo shoot:
“Fatigue” photo shoot:
Follow this journey on Chronic Eileen.
We want to hear your story. Become a Mighty contributor here.