This cookbook has quite literally been 10 years in the making ever since I started this award-winning website in 2012 while living in Nashville, TN. I could have never fathomed all the places food blogging and content creation would take me, the people I would meet, and the community that would evolve from this journey.
This cookbook features my collection of 40 mouth-watering, classic, and easy-to-prepare dessert recipes that are entirely gluten-free and 100% delicious. I am forever grateful to YOU my community, and all the creative collaborators that are helping bring this project to life. My cookbook features gorgeous full-color photography by my brother Adam Eaton (who shot the cover) Sarah Fredenburg, and Emily Baker for every recipe. I also thank Tiffany Nicholas for the amazing illustrations, and everyone in my Gluten Free Rochester online group, beyond that, have taste-tested, edited, test-baked, and cheered me online, and in person.
My cookbook includes a generous selection of plant-based desserts that are egg-free dairy-free and nut-free, easy-to-follow, step-by-step recipes with standard and metric ingredient measurements, and nutrition information for each recipe. Just Desserts is the ultimate gluten-free baking guide for anyone interested in learning how to bake no fuss yet classic gluten-free desserts and sweets.
Your pre-orders are instrumental for me as an author — and help support a local Latino-woman-owned bookstore. I plan to make this cookbook available only to small local women-BIPOC bookstores in Rochester and this preorder campaign is one step in this surreal process for me.
Thank you to everyone that continues to support me, I truly cannot believe this vision has come to life, and I am humbly grateful to my entire community for your continued love, encouragement, and support.
The Red Fern; situated unassumingly on the corner of Oxford and Park Avenue has become Rochester’s premiere all-vegan eatery. Its runaway success is in no uncertain terms due to the grit, tenacity, and finesse of Red Ferns’ audacious owner Andrea Parros. Petite in stature but bold and daring in vision; Parros along with a team of 40 hospitality professionals have the Midas touch; growing the eatery from humble beginnings to one of Rochester’s leading gluten-free and vegan restaurants.
Andrea’s Origin Story
Red Fern Owner, Andrea Parros standing outside the Red Fern entrance
We can’t dive into the story of Red Fern without starting at the source; the story of the owner and founder Andrea Parros. Parros grew up in Massachusetts and graduated from Northeastern University in 2004. Like many new college grads, she had no idea what she wanted to do with or life or career after college. What she knew is that she loved a good challenge, wanted to work with people, and was ready to take a risk.
She was smitten by a small cafe located in Boston’s posh Newbury Street district that according to Parros had a “cool, misfit, punk, vibe” that brought together people of all different backgrounds but didn’t take itself too seriously. Throwing fear to the wayside one day she stepped into the establishment and asked the then-owner if she could take a job as a dishwasher. Initially incredulous, the owner soon realized that Paros doesn’t take no for an answer. She was hired on the spot and within a week landed herself a promotion to brunch cook. Thrust into a trial-by-fire situation Parros used this opportunity as a stepping stone to learn and perform almost every role in the establishment giving her vital on-the-job experience that would serve her well for her next big role; manager of a newly hired prep crew. All this experience prepared Parros for the next big opportunity…
A Move to Rochester
In 2009 Andrea moved to Rochester to embark on her first entrepreneurial endeavor; the opening of Owl House Rochester with restaurateurs Jeff Ching and Brian Van Etten. Opening Owl House was a big next step and this leap of faith gave Parros the confidence and experience that would eventually lead to her opening The Red Fern in 2013. Together both in business and romantically Parros and Ching managed and guided Owl House to much success. Owl House became known for its local, fresh, and farm-to-table take on American classics which included a bevy of delectable vegan dishes. This attention to the details of vegan cuisine came naturally for Parros who had transitioned several years prior. Initially vegetarian, she became fully vegan (and gluten-free) after experiencing chronic bouts of psoriasis rashes during a six month stint in Hawaii. Managing the menu at Owl House gave her more experience as a vegan and gluten-free recipe developer. Andrea was enthralled by the challenge and eagerly began crafting acclaimed gluten-free and vegan menu items. Eventually, Parros and Ching mutually agreed to end their romantic and business partnership and Andrea took the respite (18 months total) to think long and hard about her next steps. This transition gave her even more gumption and confidence to set out on her own and Red Fern opened its doors to the public in 2013.
Gluten-Free at Red Fern
Having lived gluten-free for many years Andrea intimately understands the nuances of what it means to live gluten-free. Even though the restaurant serves both gluten-free and glutinous meals they have created meticulous celiac protocols and procedures. One example of this is their dedicated prep boards (red = celiac, yellow = nut) and extensive training for all staff. They are very responsive to feedback and are constantly honing in their procedures, practices, and implementation. They are no strangers to dealing with other food allergies. They once had an epi-pen incident and this led to the development of more stringent procedures and better procedures for handling tree nut allergies. For now, 95% of Red Fern’s menu can be prepared gluten-free including their scratch-made desserts, in-house baked bread, takeout, and catering.
(l) Cinnamon Fry Cakes (gf,vg) (r) Assorted Cookies
Some of the most popular dishes include the loaded mac & cheese nachos and quesadilla with buffalo tempeh. Just writing about the quesadillas makes my mouth water so I highly recommend this on your first visit. In addition to the staple menu items, they offer weekly specials that are 90% gluten-free and include Thursday fry cakes and donuts every Friday.
Quesadillas and Loaded Nachos (gf,vg)
In addition to serving great gluten-free and vegan food, Andrea has created a culture of care for the Red Fern team. There is a zero tolerance policy for harassment and misogyny, all employees receive a shift meal and shift drink every time they work, and wages start at $15 per hour no matter the position. Employees receive two weeks of paid vacation and 40 hours of sick leave. Red Fern is a must visit if you are looking for a celiac-safe date night or a quick takeout on a Wednesday. It’s also great if you live vegan or just want to eat less meat. And when you visit be sure to try the quesadillas.
If you go
Address: 283 Oxford St, Rochester, NY 14607
Hours: Tuesday – Wednesday 11 AM – 9 PM, Thursday – Friday 11 AM – 9:30 PM | Closed Sunday and Monday
Accessibility: No wheelchair access, outside seating when weather permits, curbside pick, and delivery
Kith & Kin Bakeshop & Bistro is what we call a “hidden gem.” A place you’ve probably never heard of and once you do, you feel like you’ve known about it forever. Kith and Kin may be a quaint & unassuming operation located on a busy stretch of road but it’s a well-oiled full-service gluten-free operation that you need to know about and visit (like yesterday).
Lisa & Tim Jermyn, Kith & Kin Owners
Origins
Lisa and Tim Jermyn’s journey to gluten-free entrepreneurship started close to home like so many other gluten-free origin stories. Their middle child was diagnosed with celiac disease leading to the diagnoses of their two other children and as you can imagine the course of their lives changed dramatically. Just like that Lisa was challenged with creating gluten-free versions of the foods her children had grown up loving. Ever up to the challenge; Lisa’s creation eventually led her to sell her products to businesses and cafes finally growing into a wholesale gluten-free baking operation.
Road to Success
In 2012 the bakery was featured in Buffalo News and after that feature interest in the bakery exploded. The only problem was the bakery wasn’t set up for retail. This interest kicked off the retail part of the operation. Since then Kith & Kin has moved twice, outgrowing its former spaces and finally landing in its current location on South Transit Road. The cafe addition was always part of the vision but happened sooner than planned due to the bakery’s overwhelming success.
Those early years of the retail operation weren’t without their fair share of challenges and hiccups. Learning the nuances of retail baking on the fly isn’t easy and those early challenges looked similar to what most small-scale retail food operators experience. Questions like how do we scale our operations? How much do you prepare to make money and limit food waste? A lot of it was trial and error but the Jermyns persevered.
From the beginning, Kith & Kin has marketed itself as a dedicated gluten-free establishment. This honesty and transparency came with their own set of unique challenges. Mainly overcoming the stigma and bias from the mainstream public that gluten-free is equivalent to taste-free. They learned to adapt the mantra that they made “good food that happens to be gluten-free” and found themselves winning food competitions across the city. Maintaining a consistent presence in the local food festival scene helped them build a loyal following and brand in the Buffalo and Lockport communities.
What to expect
Lisa and Tim have scaled their business into a small but mighty gluten-free bakery and eatery operation. The “bistro” is a full-service sit-down establishment with a menu that has everything from breakfast, to lunch, full-size salads, and of course a full bakery. Everything is gluten-free and the entire menu is scratch made in-house. Some of the most popular items in the bakery include childhood favorites like cut-out sugar cookies, chocolate chip and oatmeal raisin cookies, sandwich bread, muffins, cupcakes, and on Saturday’s donuts. Most gluten-free folks are looking for replicas of their childhood favorites of which the bakery is stocked galore. They offer scratch-made cream puffs that will blow your mind.
There’s an expansive lunch & dinner menu including all-day breakfast. Tim loves to make pancakes, hand-cut Rueben with “unreal” rye bread, hand-breaded mozzarella sticks and fried mac & cheese balls. One of their most popular weekdays is Friday when they sell over 75 fish fry dinners. These numbers triple during lent.
My Review
I made the hour-plus trek to Kith & Kin on a beautiful sunny Thursday afternoon in mid-August. I intentionally took the scenic (non-thruway) route making my way to Lockport basically by taking Buffalo Road west. When I arrived, I wasn’t sure what to expect from the quaint (house) exterior that sits off a busy thoroughfare road in the center of the town. Upon walking in I was immediately greeted and welcomed by the staff who quickly found the owners, Lisa and Tim Jermyn. The hospitality was overflowing from the moment I stepped in. I was offered lemonade and our generous conversation commenced.
Tim and Lisa were like open books, telling me about the establishment’s origins and making sure I had everything I needed. Tim gave me a full tour of the operations including the back of the house, front of the house, the production kitchen, and their newly built event space that sits on the grounds.
I was like a kid in a candy store; eyes wide with so much gluten-free goodness to take in. As I’ve shared, the menu is expansive and there is a mix of traditional (but elevated) diner fare, with lunch specials, soups, sandwiches, burgers, pizza and so much more. What elevates Kith & Kin above most cafes or diners is that everything from the condiments and sauces to the bread is made from scratch. That means from scratch bread and rolls, homemade sauces, hand-breaded mozzarella sticks, chicken fingers, onion rings, and more. Everything is delicious and always gluten-free. They take great care to source the highest quality gluten-free ingredients making sure that they offer celiac-friendly meals that are high quality and well-made. It took me a while to decide what to try first and I ended up ordering several items off the menu. For my late lunch/early dinner, I landed on the Pat Classic’s Burger, French Fries, and Appetizer Sampler that includes (2 each) mozzarella sticks, fried pickles, mac and cheese balls, and chicken fingers. If you are looking for lighter fare there are absolutely “healthier” options in soups and greens and a full “Brunch & Brinner” section on the menu. I ended my gluten-free food extravaganza with an assortment of items from the bakery including two types of sandwich bread and even a funnel cake. There’s hand-tossed, pizza, pancakes, paninis, and pasta; truly something for everyone. Everyone includes non-celiac folks as I had a wonderful conversation with a lovely elderly couple that frequently patronize the establishment because the food is that good.
Appetizer SamplerHand Cut FriesPat’s Classic Burger & Hand Cut Chips
Honestly, this is what makes Kith & Kin so unique. High-quality food that isn’t just good but great and that happens to be gluten-free. Every celiac’s dream. Why can’t every restaurant be this accessible?
If you go
Address: 5850 South Transit Road, Lockport NY 14094
Hours: Tuesday through Saturday 11 AM – 8 PM
Available for: Private bookings, events and catering
This month I am featuring Selena’s Mexican Restaurant owned by Kelly & Aaron Metras. I sat down with the long-time restauranteurs and discussed the ups and downs of being a woman-owned business and how they have made accessibility a focal point of everything they do at the restaurant.
Origins
Salena’s Mexican Restaurant opened in 1998, in the Village Gate (located in Rochester’s Neighborhood of the Arts) in the space currently occupied by Polizzi’s. At the time the restaurant was named Maria’s Mexican Restaurant (Maria’s maintains a location in the town of Webster). Kelly Metras was hired in 1999 during the restaurant’s expansion and relocation to its current location. She met her now husband Aaron around the same time and after years of working in front of the house and learning just about every position; the couple was approached by the owner to consider buying the place. At the time, Kelly worked full-time as a Special education teacher at a Hillside day treatment program and Aaron was promoted to the role of General Manager. It took them no time at all to decide to take the owner up on the offer and purchase the establishment in 2011.
Kelly & Aaron Metras
Those early years of restaurant management were challenging to say the least and despite the typical pitfalls and mistakes Kelly and Aarons’ combined experience as well as her cultivated network of woman-owned restauranteurs and business owners helped them to weather those early storms.
A Culture of Care
Kelly and Aaron have cultivated a culture of care with their staff. As Kelly recalls, “the previous owner as a human really took care of the staff” and that sense of camaraderie is a value that has lasted. She supports her staff in their endeavors outside of the restaurant and truly understands that restaurant work is not a forever career for everyone and that’s ok. Community care and support are intrinsic to who Kelly is as a business owner and that is seen in the networking community she co-founded a few years back called Bossy Roc. Bossy started with Kelly and her co-founder holding venting sessions as fellow special education teachers. As fate would have it both women bought restaurants in the same year and eventually held a happy hour for other women entrepreneurs. Fifteen women attended their first happy hour which greatly exceeded their expectations and has since grown into a networking group of over 500 local women entrepreneurs. Bossy’s mission is to unite women business owners through in-person & virtual networking events, educational workshops, and a private forum offering support, advice & resources.
Evolution of Gluten-Free
Generally speaking, traditional Mexican and Tex-Mex cuisine inherently lend itself to being gluten-free. Still, Kelly has admittedly not always been as familiar with the nuances of celiac disease and gluten-free contamination as she is now. Over the years she has taken her experiences learning from friends and family and applied this to her restaurant. Through these conversations, she has learned that cross-contamination is the biggest issue when it comes to dining out with celiac disease. As the restaurant’s menu has expanded there are more opportunities for cross-contamination. This fact along with the increased prevalence of celiac disease has made it a priority for Kelly and her team to replace items and ingredients that pose a potential risk. They have added a special button to their POS system and trained servers to ask detailed and specific questions when interacting with patrons. When it comes to gluten-free accessibility at Salena’s it begins with education. Kelly has been very intentional about training staff to be intentional when interacting with gluten-free customers and making sure they know if a person has celiac, is gluten intolerant or has a wheat allergy.
Says Kelly, “During COVID we had lots more time to make allergy-friendly menus, gluten-free, vegan and vegetarian and a soy-free menu and other changes that were long overdue”. Another change they made is taking peanut butter off the menu and also soybean oil. Their “hot-line” is completely gluten-free. Making instructions clear and consistent helps servers learn the menu and therefore communicate this to customers.
Gluten-free patrons appreciate this due diligence and are grateful when an eatery’s staff knows the complexities of living gluten-free. Kelly and her team is always asking the question “How can we make everyone have as positive of an experience as possible.” In addition to all of this, they take feedback very seriously. Although feedback is not always delivered with kindness; Kelly understands that feedback is very important and that there’s always a level of truth in a comment. Instead of focusing on how the message is delivered Kelly asks her team “What can we make better from this piece of feedback?”
In fact, a member of the Gluten-Free Rochester community shared a recent experience where they go sick from eating at the restaurant. Kelly and the team immediately went into investigative mode and traced the source of contamination, found the issue, and made a process and systems change. This was then communicated to the customer. For anyone with celiac disease, eating out is always a risk no matter how careful a restaurant is and this type of due diligence goes a long way in reducing instances of potential cross-contamination.
My Review
What I appreciate most about Salena’s approach is that they are putting in the effort and doing the work. They don’t claim to be perfect but they are doing what it takes to make their food and restaurant gluten-free friendly and creating systems and processes that make their restaurant accessible to everyone. The local eateries that truly understand the context and nuance of what it means to be gluten-free are few and far between. Salena’s is taking their gluten-free friendliness to the next level with the opening of a dedicated gluten-free/allergen-friendly commissary/production kitchen. This kitchen is equipped with a dedicated gluten-free fryer and will process all the food for their soon-to-be-opened taquería. This quick service model will open in the town of Greece and feature a menu of Salena’s most popular items. The beauty of this new model is that the whole family will be able to eat whether they eat meat, are vegan, or have celiac disease.
Loaded Nachos
During my visit, I was able to sample the Loaded Nachos which now, thanks to the commissary kitchen are completely gluten-free. I was hardly prepared for the massive platter of nachos that came out. This is definitely a dish for sharing and the nachos can be customized to be vegetarian or vegan. Another popular dish that is naturally gluten-free but can also be vegan is Stuffed Avocados. Filled with quinoa, black beans, and other proteins, this is Kelly’s favorite menu item. Salenas is putting in the work and doing what it takes to not only make their restaurant gluten-free friendly but keep it gluten-free friendly.
If you go
Address: 302 North Goodman Street (Village Gate) (NOTA)
Introducing the Gluten-Free Friendly Restaurant Series
I’m excited to introduce our new feature: the Gluten-Free Friendly Restaurant series. Each month I will spotlight a local eatery/restaurant that is accessible to those living gluten-free. I want to connect you with eateries that do gluten-free the right way. The debut feature is Petit Poutinerie owned by Ronnie McClive and Lizzie Clapp. You may know of Petit Poutinerie through their prolifically popular food truck that has been a gold standard in Rochester’s food truck scene for over ten years. Lizzie and Ronnie had a hand in building legislation and advocacy for food trucks in Rochester and they have built a formidable brand and now a brick-and-mortar restaurant. They are all-around bad-a** women in business and are committed to equity, quality, and accessibility
A Poutine Origin
Ronnie McClive met Liz Clapp in college after attending SUNY Brockport. Liz founded and operated the food truck Le Petit Poutine as a solo venture back in 2011/2012. Liz was inspired to start the truck and bring poutine to Rochester after many visits to Canada with her father who is French Canadian. Ronnie knew Liz from college and worked as a fill-in and supporter. Working well together Liz eventually asked her to join the business full-time as a co-owner and the rest as they say is history. They compliment each other well as friends and co-owners; playing off each other’s natural strengths and abilities. This mutual respect and camaraderie is apparent and well encapsulated throughout the fabric of Petit Poutinerie as a business and brand. Contrary to popular belief women can and do get along very well with each other in business. Ronnie and Liz were instrumental in getting early food truck laws established through advocacy and awareness efforts, one truck became two and after about a decade in business they have opened up their first brick-and-mortar fast-casual restaurant; Petit Poutinerie at 44 Elton Street on the corner of Elton Street and Atlantic Ave in Rochester’s Neighborhood of the Arts.
indoor photos of Petit Poutinerie
Committed to Gluten-Free Inclusivity
In the early days there were just three items on the menu; traditional poutine, vegetarian, and ginger soda. From the very beginning, Lizzie (the chef and recipe developer of the pair) made sure their gravy was gluten-free; testing out various brands of rice flour over the years. Liz has always been committed to sourcing the highest quality ingredients and making everything from scratch. Fries are cut fresh so the fryers have also always been gluten-free. These high standards weren’t lost on customers who would share with the ladies how grateful they were to patronize in many instances the only food truck with quality gluten-free options. As Ronnie shared this feedback with Liz, it became increasingly important to develop new recipes and items that were inherently gluten-free; think breading on chicken french and the batter for their delicious fried cheese curds.
Unlike many chefs, Liz saw it not only as great for business but as a fun challenge to make sure that Petit’s menu is as inclusive as possible. She realized early on that gluten-free is not synonymous with taste-free and a mostly gluten-free menu can work if you put in the time and effort. Ronnie recognizes that “gluten-free recipe development does take extra R&D, time effort, and money” but thinking creatively and outside the box has really worked out well for the brand. According to Ronnie, doing it as a want to and not a need, makes the ideas and process flow easier and makes development fun.
Education, Awareness & Training
In addition to ingredients and recipes, the Petit team is equally as committed to education and training for themselves and their growing team. What many people don’t realize is that gluten-free is not just about alternatives to wheat, rye, and barley but equally as important is understanding hidden sources of gluten. These “hidden” sources are commonly found in processed foods, preservatives, binders, soy sauces, and dressings. Preparation can also be a hidden source of contamination. In mixed kitchens making sure that knives, cutting boards and other supplies are stored separately from one another is also important. Petit is dedicated to making sure that staff understands gluten, celiac disease, and how to avoid cross-contamination in their thoroughly cleaned kitchen and prep line. Everything is scratch made making sourcing and food safety easier to track and manage. When you are cooking whole real food standardization is easier to implement, streamline and maintain. All their breading, batter, and coatings are gluten-free. Additionally having gluten-free staff and cooks add to a high level of understanding and knowledge as well as creating a culture where asking questions (no matter how silly they may seem) is not only valued but encouraged.
For restaurants and executive chefs that want to make their menu more inclusive to the gluten-free community, Ronnie says making small simple changes works best. For example corn tortillas instead of flour, source a gluten-free bun for a grilled chicken sandwich, and if a dessert has a crumb topping play around with oats in place of flour.
All of this accumulates to create a culture and a restaurant that is safe and friendly not just for those who live gluten-free but for those that are vegan and dairy-free as well. Unfortunately, the restaurant does fry with peanut oil so those with nut allergies are best served at another establishment. As Petit continues to grow, Liz and Ronnie are always looking for ways to make new dishes gluten-free and even adding a gluten-free dessert in the near future. In fact, they’ve launched a new vegan sandwich as you read this article a Vegan Friend Green Tomato BLT alongside the Buffalo Tofu sandwich.
My Review
Ironically even though I am a frequent patron of the restaurant as a creature of habit I’ve tended to stick to the same menu items. So far I’ve tried to my delight their Buffalo Tofu Sandwich, Sloppy Joe Nachos, Bacon Poutine, Fried Cheese Curds, and the Beet Walnut Salad. On this particular visit after my interview with Ronnie, they treated me to a tour of the kitchen where I was able to see the amazing cooks in action and then I tried the Chicken Cutlet Sandwich which can be served on a gluten-free ciabatta bun by Biscotti Brewers a local woman-owned gluten-free bakery. If you like a thick rustic style sandwich then you’ll like the cutlet. Battered to perfection and topped with arugula, lemon vinaigrette, goat cheese, and balsamic the sandwich will without a doubt fill you up. The gluten-free bun is sized in perfect proportion to the chicken cutlet but like most gluten-free buns after a few bites the lack of gluten protein, all the juices, and voracious biting; the bread begins to lose the battle, and switching to using a knife and fork the rest of the way allows you to fully finish getting through the sandwich. This is not an indictment on the quality of the bun — just par for the course when you are as used to gluten-free bread as I am. Gluten-free bread just doesn’t act like traditional bread and after a decade of living gluten-free, this is a fact of life.
Chris the BartenderTraditional PoutineGluten Free BunGrape SodaZoe pouring a drinkTraditional Poutine to goChicken Cutlet Sandwich
What I love even more than Petit Poutinerie’s food is their A+ service and staff. Every single team member I’ve ever interacted with goes above and beyond to make sure that you feel welcome and accommodated. They are knowledgeable, patient, kind, and passionate –treating you like family. I’ve had the pleasure of interacting with Zoe, Chris, and Sophie on a number of occasions and at this point, I’m on a first-name basis. This is a reflection of the style and personality of the restaurant’s owners — who have curated an ethos and mission to produce quality every single time with a smile.
I’m elated to feature Petit Poutinerie as the first restaurant of this series and I exhort you to visit as soon as you can whether you are gluten-free, vegan, or just like good real food made locally by a bad-a ** women-led team.
If you go
Address: 44 Elton Street (corner of Elton and Atlantic) (NOTA)
Hours: Wednesday through Saturday 11 AM – 9 PM or at the Brighton Farmers Market Every Sunday
Available for: Private bookings, EVENTS & WEDDINGS
EMAIL: ronnie@lepetitpoutine.com or elizabeth@lepetitpoutine.com For your first visit try: Poutine Flight, Fried Cheese Curds, and a Lemon Lavender Soda.
Today is Wednesday May 12, 2021 and it also happens to be National Fibromyalgia Awareness Day.
It’s been 11 years since I was diagnosed with fibromyalgia in the fall of 2010 and my life has never been the same.
11 years of ups and downs.
11 years of learning how to live a full life as a disabled person.
11 years of turning lemons into lemonade.
I have been fortunate to have met a cadre of amazing people over the past decade. Many of these experiences and people are because of my work and affiliation with the U.S Pain Foundation. I have the honor of being featured in the latest issues of U.S Pain’s quarterly magazine The Invisible Project. You can read more about my journey living with fibromyalgia here.
I’ve some so many priceless experiences and done so many wonderful things even while this illness changes the scope and trajectory of my life. I cant say that I would change a thing about any of the experiences that I have had. Every single moment, the highs and lows, and good days and the not so good days have placed me here in this moment.
What to learn more about fibromyalgia and what it’s like to live with it?
Click here to read about “The Spoon Theory” by Christine Miserandino
Click here to read articles I’ve written over on my original blog
About Fibromyalgia Awareness Day
Did you know that Fibromyalgia Awareness Day was started right here at the NFA in 1998? Since then millions of people have embraced May 12th as a day to share with others what it is like to live with fibromyalgia. Now, 20 years later, the National Fibromyalgia Association is still working hard to bring awareness across the globe through Awareness day.
About Calvin Eaton
(he/his/him) Calvin Eaton is a disabled community educator, content creator, and social entrepreneur, whose area of expertise includes antiracism, equity, justice, instructional design, and program development. In 2016 Mr. Eaton founded 540WMain, Inc. a virtual non-profit organization and antiracist education brand that promotes justice for all. The organization encourages individuals to broaden their horizons and learn more about multidisciplinary issues and topics that impact the world.
A season six episode of the NBC comedy Brooklyn Nine Nine (I’m binge watching on Hulu) featured a scene that talked about the social construct of (FOMO) or “fear of missing out.” This was the first time I’ve really seen the term used in pop culture and it really got me thinking about fibromyalgia and missing out.
a feeling of intense worry that an interesting or exciting event is happening somewhere else
The fear of missing out refers to the feeling or perception that others are having more fun, living better lives, or experiencing better things than you are. It involves a deep sense of envy and affects self-esteem. It is often exacerbated by social media sites like Instagram and Facebook where everyone is “stunting” and showing only the best most curated aspects of their lives and travels. All of this missing action can be anxiety inducing for everyone but especially those of us living with a chronic illness that already have internalized guilt and shame for not being as active as we once were.
Fibromyalgia and Missing Out
It is well known that living with fibromyaglia means missing out on a lot of life. It is this perpetual missing out that makes managing the illness so challenging. If one is not missing out in order to rest up so as to not miss out on a commitment coming up later; you are missing out because of a fibro flare or your body crashing because you over did it earlier in the day or in general. All of this coupled with a society and culture that tells us to do more and rest less or institutions that do not truly value vacation, sick time, or mental health wellness. We are all bombarded everyday in media and by our peers to push through, do more, and say yes; usually at the expense of mental and physical health. Most people cannot keep up. For those of us living with fibromyalgia and related conditions trying to keep up can be a matter of life and death.
Years ago in my fibromyalgia journey, I went through periods of experiencing intense feelings of guilt, anger and shame for not being able to do the things I wanted and keep up with social and career commitments. The constant push and pull of my body eventually became too much and led me to a nine-month long period of being bed bound from September 2012 – March 2013. I had to reshape my outlook and perspective in order to climb out of a dark psychological and painful physical place.
How I learned to minimize guilt from FOMO (and still learning)
Focusing on what I can do as opposed to what I cannot
I started blogging and writing poetry
I made real connections via online support groups where I could vent my frustrations but also took time to value the real life connections when I was able to make them.
Very Well Mindechos and expounds upon many of the strategies that have worked for me over the years:
Change your focus. Rather than focusing on what you lack, try noticing what you have. This is easier said than done on social media, where we may be bombarded with images of things we do not have, but it can be done. Add more positive people to your feed; hide people who tend to brag too much or who are not supportive of you. You can change your feed to show you less of what triggers your FOMO and more of what makes you feel good about yourself. Work on identifying what may be sapping your joy online. Work to minimize these as you add more to your feed (and life) that makes you happy.
Keep a journal. It is common to post on social media to keep a record of the fun things you do. However, you may find yourself noticing a little too much whether people are validating your experiences online. If this is the case, you may want to take some of your photos and memories offline and keep a personal journal of your best memories, either online or on paper. This can help you to shift your focus from public approval to private appreciation of the things that make your life great. This shift can sometimes help you to get out of the cycle of social media and FOMO.
Seek out real connections. You may find yourself seeking greater connection when you are feeling depressed or anxious, and this is healthy. Feelings of loneliness or exclusion are actually our brain’s way of telling us that we need to seek out greater connections with others and increase our sense of belonging. Unfortunately, social media engagement is not always the way to accomplish this—you might be running from one bad situation right into an even worse one.
Living with fibromyalgia is journey not a destination
Of course, none of this is easy to do. As social media takes over more of our lives it can be easy to get sucked into the vortex of comparing ourselves to others. All the rest and care that is involved with living with fibromyalgia can be incredibly isolating. Trying to compare yourself to others makes is a recipe for disaster. Each of us manages the illness differently. Some are able to maintain a full-time job despite living with fibromyalgia; many others are not. What is important to keep in mind is that our individual talents and experiences are valuable and when we focus on our own abilities and less on what we cannot do and more on what we are doing, the fear and guilt of missing out lessens.
Living with fibromyalgia is journey not a destination and as long as we have to endure the challenges that this chronic illness brings into our lives there will always something that we are missing. Accepting this reality is not an admission of defeat but an act of strength and self-preservation.
