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A black and white photo of rheumatoid arthritis patient, Chantelle Marcia, sitting atop a colorful background. To the right of the image is the text: Chantelle’s Story: How CreakyKitchen Helped Me Build Community During COVID-19
Credit: Chantelle Marcia / Tatiana Ayazo

Remember in March 2020 when the whole world started to shut down to help prevent the spread of COVID-19? Those who weren’t essential employees were asked to stay home unless they were buying food or had a medical emergency. People were separated from friends and family. Loneliness and isolation crept into our daily lives — and started to settle there.

Within a few weeks or months, many restrictions were lifted, but not everyone was equally able to start the long return to “normal.” Many people who are immunocompromised weren’t comfortable being in public — not when there were still so many unknowns about the coronavirus and, specifically, how it impacts high-risk individuals. This was the case for Chantelle Marical, a rheumatoid arthritis patient in Boston, Massachusetts, who says the pandemic was — and still is — a very isolating time.

“It’s basically been me and my husband in the bubble of our apartment,” says Chantelle, who was primarily working from home at the time. But her husband is an essential employee, which meant Chantelle by herself a lot. “It amplifies the loneliness.”

(Read more about Chantelle’s experience during the COVID-19 pandemic.)

She stayed in touch with family and friends via phone calls and texts, but that only did so much to fill the social void. Then, one day last fall, Chantelle was approached by CreakyJoints with the opportunity to host a virtual cooking show — an idea that had been simmering in her head for some time. Chantelle has been a home chef since her childhood. Her husband had long suggested that she start her own cooking show — because of her culinary talents and her habit of talking through recipes while she cooks.

Chantelle knew she couldn’t say no.

“I loved the idea of inviting people into my kitchen and creating a space where other chronic illness patients could come together and socialize,” Chantelle says.

In a poster presented at ACR Convergence 2021, the annual meeting of the American College of Rheumatology, Chantelle shares how hosting the show, known as CreakyKitchen, helped her through the pandemic.

“Being able to connect with members of my CreakyKitchen community has been a huge boost for my mental health,” she writes. “CreakyKitchen gives me a fun, interactive monthly event to look forward to, which has been especially important during the COVID-19 pandemic.”

Here’s more about how CreakyKitchen has helped Chantelle get through the pandemic, and what she hopes others can take away from the show.

Learning to Cooking with Arthritis

Though cooking has become a passion of Chantelle’s, she says learning the trade was “born out of necessity.” Her mother had a chronic illness and was frequently hospitalized throughout Chantelle’s childhood. When she was very young, Chantelle would stay with family. But once she was old enough to stay home alone, she realized she need to learn the basics of cooking if she wanted to eat.

Once she mastered the art of sandwich making, Chantelle began absorbing recipes from her family members and assisting them in the kitchen whenever the opportunity presented itself. In high school, she joined a culinary program where students were tasked with preparing and serving meals to faculty members.

Chantelle’s love of the culinary world never waned, even when she was diagnosed with rheumatoid arthritis (RA) at age 25. Though that’s not to say things didn’t change. Cooking with arthritis is a challenge, as joint pain and stiffness can turn simple tasks into taxing ones. But over time, and with tips and tricks from other fellow RA patients, Chantelle learned how to adapt so she could continue with her passion without experiencing as much pain.

Teaching others to similarly adapt has become a key part of the CreakyKitchen mission.

“Many people dealing with RA and other autoimmune disorders really take into account what they put in their body, and I try to keep that in mind when developing recipes for CreakyKitchen,” Chantelle says. “But ultimately the aim is to show people how I’m going to cook rather than what I’m going to cook.”

Chantelle’s Arthritis-Friendly Cooking Hacks

Get help from the grocery store

Chantelle says if your budget allows, it’s sometimes worth spending a little extra money to make cooking easier. “If you can spend the extra dollar and get your produce or meat pre-chopped, do it. Or go to the frozen food section. If it makes it easier for your joints to take a little help from the store, by all means do it.”

Don’t feel like everything has to be homemade

Chantelle admits that this tip comes courtesy of the culinary queen, Ina Garten. “I always prided myself for the fact that I never bought tomato sauce,” Chantelle says. “But one day I was watching Ina Garten, and she grabbed a jar of Rao’s tomato sauce to use in her recipe. If it’s good enough for her, it’s good enough for me.”

Spread your prep-work throughout the day

When you tune into CreakyKitchen, you will rarely see Chantelle chopping vegetables. That’s because she does most of the work before turning on the camera — a pandemic perk. But if you aren’t home all day, consider prepping certain meal components (cleaning and chopping items, for example) throughout the week. Chantelle says enlisting help can make prep work easier. “You can ask your partner, or even enlist your child if they are old enough because it’s a great life skill to teach.”

Freeze, freeze, freeze

If you’re having a day with minimum pain and extra time, consider preparing some freezer-friendly meals or recipe components, like chopped vegetables or cut meat. This way you’re a step ahead on days that are particularly tough. This can also help you rely less on takeout meals.

Growing Her Chronic Illness Community

CreakyKitchen viewers were eager to ask questions and happy to vote in real-time polls that Chantelle would present to the group, like which flavor of diced tomatoes she should use in her recipe. (“Fire roasted won, and I was pleasantly surprised with the results,” Chantelle recalls.)  And with each episode, CreakyKitchen has gained more followers. According to Chantelle’s paper, more than 100 people regularly attend in real time. (CreakyKitchen episodes can be accessed afterward via YouTube and the CreakyKitchen website.)

Chantelle didn’t expect the sense of community to be so strong among viewers who come from all over the country and globe.

“Whatever our differences are in our backgrounds, religion, or political views, we all still know that we’re all fighting the same fight. And being around people who understand that is really helpful and powerful, especially over the past year,” Chantelle says. Viewers have felt comfortable sharing their experiences with one another, particularly because there is “no competition,” as Chantelle puts it. “Nobody is saying their disease or situation is worse than anyone else,” which allows members to learn from one another.

And because everyone participating is living with chronic illness, Chantelle feels there is no need to directly talk about the disease, which she refers to as the “constant.”

“It’s almost a safer space because we don’t have to address the constant in the room,” she explains. “Yes, the tips I share may be specific to people with arthritis, but I don’t have to explain the arthritis because we all know about it. So we can almost ignore it and focus on our collective passion, which in this case is cooking.”

Learning From Fellow Spoonies

Although Chantelle may be the “teacher” in CreakyKitchen, she has also learned a lot from being a part of the show.

For starters, developing new recipes each month has made an impact on her day-to-day cooking.

“I have started re-thinking and changing my own go-to recipes and finding ways to alter them to keep the flavors as good as they were, but with a healthier twist,” she writes in her paper. “In doing so, I have already shed a few pounds, which is a great relief for my back, knees, and ankles.

But the show has changed her life outside the kitchen as well. Thanks to viewers and guests hosts, Chantelle has learned new hacks to help her get through the day and been reminded of classic advice, like resting and accepting help when it’s offered.

“I’m a very hyper-independent person and I do not like asking for help ever, but I’ve been reminded that I have to if I want to have some reasonable facsimile of normality,” Chantelle says. “That help can be from another human being, it can be from the store, or it can be helping yourself by pacing yourself. Just as long as you take the help when offered or ask for it when needed.”

To meet other members of the chronic illness community while learning how to cook delicious recipes, register for the next CreakyKitchen event.

To access more resources and support during the COVID-19 pandemic, join the Global Healthy Living Foundation’s free COVID-19 Patient Support Program.

Want to Get More Involved with Patient Advocacy?

The 50-State Network is the grassroots advocacy arm of CreakyJoints and the Global Healthy Living Foundation, comprised of patients with chronic illness who are trained as health care activists to proactively connect with local, state, and federal health policy stakeholders to share their perspective and influence change. If you want to effect change and make health care more affordable and accessible to patients with chronic illness, learn more here.

Interview with Chantelle Marcial, rheumatoid arthritis patient

Marcial C. CreakyKitchen: How the Online Cooking Show I Started is Building Community and Encouraging Better Food Choices for Me and Others Living with Rheumatic and Chronic Disease. Arthritis Rheumatology. 2021. https://acrabstracts.org/abstract/creakykitchen-how-the-online-cooking-show-i-started-is-building-community-and-encouraging-better-food-choices-for-me-and-others-living-with-rheumatic-and-chronic-disease/.

 

 

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