It was September 15, 2004. I’ll never forget that date. I nervously sat in the waiting room at the doctor’s office.
“It’s going to be bad news.”
“Why do you say that?” My mother responded.
“It’s the feast of Our Lady of Sorrows. It’s going to be sorrowful news.”
The previous eight months were spent in pain, swelling and daily fatigue. Some days I couldn’t even walk up stairs. What was wrong? Why had icing and physical therapy not worked? Why did the x-rays and things always come back normal?
My story is not unlike many stories of going undiagnosed for months, even years.
Sunday, February 2nd is Rheumatoid Awareness Day. I would like to share some information about my own disease. And although I haven’t always been very open in the past about it, I want to come out of my shell, just a bit that is.
I have oligoarticular juvenile idiopathic arthritis rheumatoid disease:
- They only call it juvenile if you were diagnosed before the age of 16
- This usually affects the major joints of the body (and organs as well)
- I hate telling people I have “arthritis” because that is not accurate. I have an autoimmune disease which means I have a hyperactive immune system. My body is attacking itself.
- This is an invisible disease. Even on my worst days I look pretty normal on the outside.
- Flare-ups can occur for days, weeks, even months
- There is no cure. Any treatment I get is only treating the symptoms – NSAIDS, DMARDS, Biologics, steroid injections are used in various fashions for different people to treat the disease.
- Side effects: not fun
- It is a heterogeneous disease. Someone with the exact same diagnosis as me (though I have yet to meet someone) could have totally different symptoms.
Despite this, my disease has taught me numerous things. It has taught me a lot about suffering, compassion and concern for others. It has taught me patience. Chronic diseases are tough. They don’t go away. But I’ve also learned to be patient with other people. You never know what he or she might be suffering from. You can’t always physically see diseases. Along this journey I have also learned to accept all things as the will of God. If I am in remission, then praise God. If I’m not, then praise God.
It is so important to spread awareness. What would Rheumatoid Awareness mean to me? For me raising awareness would mean finding a voice for all those who daily suffer from this disease. It would mean better treatment, greater understanding and more research into finding a cure. It would mean taking the word “arthritis” out of my diagnosis.