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  • Writer's pictureCaroline Louise

Spoonful of Gems: Jewellery which advocates for 'Spoonies'

Spoonful of Gems is a delicate jewellery collection of beads, stones and tiny spoons, created by Chaylee McCleese, 19, from Idaho to advocate for ‘spoonies’ with chronic conditions and to feel “less alone” in her psoriatic arthritis.

Chaylee is a  partner teacher at her local charter school and recently became a council member for the Young Patients Autoimmune Research and Empowerment Alliance. Her journey with psoriatic arthritis started in her senior year of highschool with a variety of symptoms which led to her dropping out of college a week into her course. “It took me around 9 months to get the proper diagnosis of psoriatic arthritis,” Chaylee explained. “During those 9 months, I lost myself. I always based my self-worth on my grades, and what I was accomplishing, and I could not even get out of bed. It was devastating. I felt like the biggest failure in the world. I had to have help showering, making food, and at one point using a cane to get around.”

Psoriatic arthritis is a form of Arthritis which affects people with the skin condition psoriasis. Chaylee suffers from the skin condition on her scalp, it causes red, scaly rashes and thick, pitted fingernails and spreads to her elbows, knees and arms during flare-ups. There is no cure for psoriatic arthritis, Chaylee explains that there are only treatments to help the symptoms: “Without treatment, psoriatic arthritis will cause permanent joint damage, which is irreversible. The whole point of treatments is to suppress my immune system, so it will not attack my healthy joints.”

It’s estimated that 125 million people suffer from psoriasis worldwide and around 30% of them also have psoriatic arthritis. 

“My fingers and hands are swollen all of the time. Some days they hurt so bad I cannot grip even a coffee cup," Chaylee said. "I wake up as stiff as a board, and typically the feeling does not go away until it's time to go back to bed. Psoriatic arthritis also likes to attack your joints, so I have had tendonitis in both of my wrists and fingers, along with back pain and weak knees. The biggest problem I have with this illness is the fatigue that comes with it. Even with treatment, I am exhausted 80% of the time no matter what I do. Fatigue is not talked about enough, and is seen as laziness, but it is not.”

Chaylee started Spoonful of Gems in February 2023 after discovering the ‘spoon theory’ online: “I immediately related to it. I wanted some sort of spoon item to hold with me every day as a reminder to be kind to myself. I searched online for spoon necklaces but nothing was like what I imagined, so I wondered if I could make them myself.  My boyfriend bought me some cheap jewellery supplies and spoon charms so that I could make myself the necklace I imagined.” 

The spoon theory is a theory used to explain how people who live with chronic conditions, pain or disabilities have limited energy and expend more energy on everyday tasks, the spoon represents the physical and mental load required to complete tasks. 

Her jewellery is a simple, elegant reminder that everyone has journeys and struggles which cannot be seen however, the spoon charms represent this journey on the outside to inspire pride and start important conversations.

“Sometimes I like to listen to music or audiobooks while I just mess around with different styles. It's hard for me to be precise when my hands are puffed up, but I wear compression gloves when I make it and give myself time and grace to complete each piece. I mainly use silver wire, charms, and hooks to make them. I also use small pliers to help me open and close the hoops. I am not an expert at making jewellery by any means. I just make things I would wear, and love.”

However, for Chaylee the community her jewellery has built is just as important: “Since starting Spoonful Of Gems I have made over 10+ close friends who also have a chronic illness and identify as a 'spoonie' I have received tons of messages, and reviews saying that my jewellery or story has impacted them in some way.”

She has built a community of 1,132 followers online where she has been sharing her experience as a ‘spoonie’ with life updates, hobby ideas and treatment reviews. She even got her first tattoo earlier this year inspired by the support of the community.

“Finding people who understand what it is like to live with pain every day, makes me feel less alone. It's also a great way to learn about different conditions, symptoms, and research. Doctors and specialists are learning something new about autoimmune diseases with each patient that walks through their door, and when we talk about what we go through we not only get support, but we help raise important questions about treatment and pain management. When you have a chronic illness, you have to be your own advocate, and the online 'Spoonie' community is there for you to help you demand a better way of living.”

Chaylee has been taking Methotrexate weekly which she feels reduces her pain by around 40%, she also has a Humira injection in her thigh every 2 weeks and in the last 3 months has been able to get back to her old self, a little bit, starting with the jewellery. “In that small amount of time, I got a job and have been consistently working 35 hours a week. I may not be in college, or doing what I thought I would be but I have learned to be proud of my small accomplishments,” she explains. 

She hopes Spoonful of Gems can start conversations in chronic illness and make people feel more comfortable expressing themselves and their experience.

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