Karol Ruth Silverstein
Greetings everyone! I’m Karol and I’m an Arthritis Warrior. I was diagnosed with JRA at 13 and was on “aspirin therapy” (sometimes taking as many as 18 aspirins a day!) for years. I was a stubborn, angry teenager and didn’t take very good care of my body. I didn’t meet another young person with arthritis until I was in rehab following my first joint replacement surgery at 21. That’s when I crossed the threshold from having a chronic illness to having a disability, and I’ve identified as disabled ever since.
Embracing being disabled was oddly empowering for me. I think it made me face the fact that I couldn’t wish or daydream away this illness and that I’d better get busy figuring out how to not only survive it—but thrive with it. I started college and decided to go for my lifelong dream of working in the entertainment industry. After a stellar undergrad experience, where my inherent badassery really flourished, I left my hometown of Philadelphia for Los Angeles to attend the prestigious American Film Institute. A few years of working in film and TV production followed before I realized I was destroying my joints working up a career ladder I didn’t want to be on anyway. I shifted my focus to writing, working on screenplays at first, and then children’s books.
The children’s literature community is where I really found my tribe. I got very involved with the local chapter of The Society of Children’s Book Writers and Illustrators and made a great group of friends there. My volunteer work with this organization led to my landing an agent and subsequently selling my debut young adult novel, Cursed (June 2019). The story is about a young teen who’s recently been diagnosed with juvenile arthritis and is handling it badly—just like I had. It’s fiction but definitely drawn from personal experiences. In January 2020, my book won the Schneider Family Book Award in the teen category. Given by the American Library Association, the Schneider Family Book Awards honor an author or illustrator for a book that embodies an artistic expression of the disability experience. Winning an award that celebrates my community and our experiences was a tremendous honor.
There’s no sugar-coating that my disability due to arthritis is fairly significant. But two knee replacements, twelve hip replacements, lots of different medications, and learning to take much better care of my body and my psyche later, I’m still ambulatory (with crutches,) can drive, and am able to live independently with a little help from the government and my friends (okay…maybe a lot of help at times). Fight on fellow warriors!
Wonderful to meet you! I’m Jes, a 30-year-old mom to 2 toddlers, and one child who watches over us from above. I have Ankylosing Spondylitis Arthritis and Endometriosis/Adenomyosis which resulted in having a total hysterectomy at 29.
My yearning to connect with others began during my second pregnancy where I experienced the loss of one of our twin girls. I felt deep grief and needed to know I wasn’t alone in the feeling I had. I found a lot of comfort In the pregnancy loss community.
I felt this same feeling of longing after my Arthritis diagnosis and hysterectomy at 29. I think like most of us with chronic health issues I felt misunderstood and unheard of for my struggles. I was dismissed by the doctor’s time and time again. I felt like I was always given such limited information, and my family and friends just could not connect with me.
I began to slowly but surely, find my way into the online spoonie community. I found that there was an entire community of people of all ages, struggling (and thriving) with chronic illness’ and pain. I found YouTube channels dedicated to educating about chronic illness and podcasts (The Ankylosing Spondylitis Podcast has been my lifeline) where people finally understood me, and I understood them.
In May of this year, I decided I would create my own spoonie account, and it’s been one of the best decisions I’ve ever made. I have made so many incredible online friends with deep connections, I’ve learned so much from my peers, and I’ve had some wonderful messages of appreciation for sharing my story vulnerably.
I think what I’m most proud of is my #injectwithme campaign. It started as me simply filming my own injections to feel a bit braver and I would share on my personal account. I would tell it wasn’t landing right and possibly freaked people out. It wasn’t until I started sharing on my spoonie account that I saw that this could be support for someone else, or it could be educational, and as of more recently, a fun way to lighten the heaviness of chronic illness.
I’m still on my journey got to figure out exactly how to balance chronic illness as a mom, the things that work for me, and how this has shaped me as a person, but now I’m doing it with an army of warriors beside me in this community that I’m so thankful for.
I have big plans to help connect us all, one being a podcast, coming in the next few months!
@house_of_spoons and @craayjayy
My name is Eileen Davidson also known as Chronic Eileen. I live near beautiful Vancouver British Columbia with my 7-year-old son Jacob, to whom I am a single mother. Being a mom takes a lot of my time and little energy I have, but well worth it.
So why do I call myself Chronic Eileen?
Well, I live with Rheumatoid arthritis, osteoarthritis, fibromyalgia, myeloneuropathy, endometriosis, anxiety, and depression. My chronic illness diagnosis started in 2015 when I was only 29. My diagnosis turned my world upside down. These last 5 years have really shaped me into who I am today- I spend a lot of my time taking care of my health while juggling motherhood.
I also advocate for those living with chronic illness in a number of different ways. I started off my advocacy by becoming an ambassador for The Arthritis Society in 2017 then in 2018 I joined the Arthritis Research Canada patient advisory board (APAB). As of 2020 I also sit on the Doctors of BC Shared Care Chronic Pain Advisory Committee and I am a Patient Engagement Research Ambassador for the Canadian Institute of Health Research Institute for Musculoskeletal Health and Arthritis (CIHR-IMHA-PERA). While diving into the world of patient advocacy I discovered I have a love for health research.
While I became a patient advocate in my community I blogged about my journey with chronic illness on www.chroniceileen.com which has grown in ways I never imagined when I started off feeling alone and misunderstood! Currently, I am a regular writer for Creaky Joints. I have been featured on CNN, Chatelaine, Inked Magazine, and more. With my advocacy and blogging, I’ve had the pleasure of meeting Effie at the 2019 HealtheVoices conference in Dallas Texas!
I became an advocate because I remember how lost, confused, and alone I felt when I started my unwanted journey with chronic illness. I didn’t want to sit around in self-pity all the time so I developed the mindset that if I am going to be the sick girl, I might as well kick ass at it which has helped me in my journey. I hope my story and my advocacy helps someone today.
Find Eileen on
www.arthritisresearch.ca – Arthritis Research Canada
www.arthritis.ca – Arthritis Society
www.creakyjoints.org – Creaky Joints
https://sharedcarebc.ca/ – Doctors of BC Shared Care Chronic Pain Advisory Committee
https://cihr-irsc.gc.ca/e/27297.html – CIHR-IMHA-PERA
Hi, my name is Shannon and I’m a 22-year-old student currently in my final year studying Criminology with Psychology. My arthritis journey started at the age of 17, I finally got my diagnosis after being constantly told it was growing pains.
I created my arthritis account @life_with_arthritis_ out of frustration for the lack of support for younger people with this illness (and by younger, I don’t mean just my age; I also mean people older than me too). The stereotypical “it’s an old people’s disease” annoyed me, so I wanted to create a network that showcased anybody at any age can get it and what comes along with it!
I want to showcase the realities of having arthritis such as anxiety, depression, side effects, and other issues that many people don’t see. I share my story in order to help people, I want people to not feel alone.
Away from this I enjoy going to the gym, walking my pug called Pixie. I’ve recently started with a personal trainer in order to gain some well-needed strength in my bones (and also lose the dreaded weight gain from steroids) I also love to read and I enjoy doing Yoga as I have a subscription to Primal Fitness, they send me a yoga video once a week and I do it from the comfort of my own home.
I’m not sure where life is going to take me, but one sure thing is, I am not letting arthritis control my life, we only have one life so let’s make it a good one!
FB: Life with Arthritis”