I was 29 on April 8th, 2015, when I was diagnosed with seropositive rheumatoid arthritis. I walked out of my rheumatologist’s office knowing from that day forward I would never be healthy again.
I had no idea someone my age could even get arthritis, let alone exactly what it was. I knew of various crippling autoimmune diseases, like MS, HIV, lupus, and diabetes. But I didn’t know arthritis was in the same category.
I also knew it was painful, because my late grandmother and aunt both had it. I remember my grandmother staying with us during my teens with her knee replacement surgeries. I figured it was because she was just old. I wish I could turn to them for advice now. Instead, my work is done in their memory.
I didn’t know what an invisible illness really was, and I certainly didn’t know how to go about living with one. But I now had the very thing that’s the number one cause of disability in Canada among women… and I was scared.
Uncomfortable in my own skin
Having an invisible illness makes me feel uncomfortable in my own skin. Which is why I’ve chosen to decorate it, to make myself feel beautiful despite feeling the invasive toll arthritis has on my body. Art has always been important in my family, with my father being an amazing painter. Being on disability doesn’t allow me to really be able to afford to finish my vision, but I still love them. Even if some of them are old, they are memories and they are art to me.
I often hear when I tell people I am sick that I look great, that I am beautiful — that I don’t look sick. I tell them I have arthritis, and I see the pity out of their eyes diminish. I know they don’t understand the severity of the disease. Speaking about health makes them uncomfortable — imagine living with it. If only they could walk one day in my shoes.
I am constantly told I am too young for that, yet as a mother, my heart breaks, as I know children as young as infants can get autoimmune arthritis. Arthritis isn’t for old people, age is just a factor. I am just one of the unlucky ones to have been struck at a young age — like any person struck with a severe health issue.
I didn’t just have myself to look after
Being diagnosed with a severe chronic illness placed me on disability from my beloved job as an esthetician. Not only was my diagnosis terrifying, but it was stressful because I didn’t have only myself to look after. I also had my toddler Jacob, who was two years old at the time of my diagnosis and I was a single mother barely getting by.
I broke down, I stopped treatment. I was in a nervous breakdown from the stress and pain of living with this monstrous disease. I hit rock bottom.
I missed being healthy, and I knew my disease had no cure. Medications and side effects were horrendous. I was now suffering from severe depression and anxiety along with my two forms of arthritis, osteoarthritis and rheumatoid arthritis.
I was in a world of pain and the fatigue left me unable to perform most daily tasks, like showering or preparing food for myself. I was so tired, but in so much pain I could barely sleep or was sleeping too much. I could see how it was negatively affecting my mothering — from always being sick and needing time away from my son to rest. The guilt of no longer being able to be the mother I once used to be tormented me.
Learning to fight back
I decided to get in the gym, get healthier, and back to my rheumatologist for treatment. I started taking care of myself again and fighting.
I started posting on my personal Facebook page about what it was like living with these diseases, and received a large response from people telling me they had no idea arthritis was like that. Some didn’t believe I needed help because I do not look sick. I was told, “It’s just arthritis.”
But that didn’t make sense to me when I knew my arthritis could affect not only my joints, but multiple organs like my heart, lungs, and brain. RA complications can even lead to death.
I didn’t understand how one day I could feel somewhat ok and the next day I felt horrendous. I didn’t understand fatigue management yet. I had so much on my plate. I was hurt by the negative words and wanted to show people they were wrong about me and wrong about arthritis. I wanted to expose the monster I had inside me, attacking my healthy cells.
I realized then that I had an invisible illness, and the positive response to sharing my story was an experience that inspired me to become an invisible illness advocate and ambassador with the Arthritis Society Canada. I became Chronic Eileen.
Now I fight for others, too
Before arthritis, I loved to go to concerts and nightclubs to dance. Music was my life. Gone might be those days as I focus my time now on my son and my health. But being someone who can’t just sit still and watch TV all day, I decided to start blogging about my life with chronic illness and how I am trying to fight for better treatment and awareness of what it’s like to live with a chronic and invisible illness here in Canada.
I dedicate my time to volunteering, raising funds, and my writing in hopes to inspire others. I have really high hopes, even through my adversity. In some ways, I look at my diagnosis of arthritis as a blessing, because it allowed me to become the woman and mother I am today.
The disease has changed me, and not just physically. I hope to take my suffering and use it as a voice for the other 4.6 million Canadians with the disease and the 54 million neighbors in the United States. If I am going to be the sick girl, I might as well kick ass at it!
I have since learned to set goals for myself, believe in myself, and strive to be the best I can be despite my health. With my story, I hope to spread compassion and empathy toward those living with chronic pain and illness.