Juvenile Rheumatoid Arthritis that has continued into my adult years, Ehlers-Danlos Syndrome, Insomnia
Bio (Who are you? What do you do? Tell me about yourself):
I recently graduated from University with a Bachelor of Science in English Education and Literature. I love to read (Victorian literature), write (kid lit), and drink copious amounts of tea. I am a tireless advocate for chronically ill folks and for myself, I never want anyone, especially young children, to feel as alone and lost as I did when I was diagnosed at 9.
Is there anything that helps you to rise above your condition? (Include anything that has worked for you. Examples: conventional medication, supplements, alternative treatments, diet, your faith, religion, healers, spirituality, exercise. Please also include any advice, tips or tricks you may have)
More than anything I use bibliotherapy to rise above my condition. Whether that is seeking a literary friend who can relate to me or simply escaping to another world for a respite from my own, reading is my therapy.
What does life look like at its best with your condition? (Describe a what a good day looks like)
The best days involve long walks and time outside. More importantly than that, my best days are ones where I can teach without major symptoms that set me back. When my disease is not being wild and making me hurt or extremely fatigued, I am a naturally high-energy, kinesthetic person. I love to have fun with my students in the classroom.
What challenges have you faced in regards to your specific situation?
I have end-stage damage in the wrist of my dominant hand. Many tendons were rupturing over a protruding bone and I lost all range of motion. I had to have surgery to save my remaining tendons and tissues and it has been a long and grueling recovery. I have lost so much autonomy over my life in not being able to use my hands normally.
I also hugely face the challenge of “you don’t look sick”. I am a girly girl and I like to wear dresses and makeup. I am met with disbelief and rude unprecedented comments about my condition more than I am met with empathy. Even people who are close to me frequently forget about my disease.
They say our life experiences shape who we are. How has your condition molded you to the person you are today? How has it inspired you and what strengths have you gained from your health journey?
I am a relentless fighter because of my disease. In all aspects of life. I have become good at finding positivity in very tough times. I’m also really clever about opening things/picking things up without my hands.
What is the one life motto or mantra that helps you to keep fighting/going on with your condition and why?
“If you can, you must”. There was a time I could not walk – now this quote inspires me to walk everyday that I can, especially when I am sad about my hands not working. It helps me to count my blessings and remember how much I CAN do.
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