by Ashley Gismondi
Exploring the benefits of connecting with other parents facing similar challenges and finding a sense of community.
Hi, and welcome back to the Parent’s Corner! I’m glad to be connecting with everyone again. This time I’ll be touching upon some ways to build a community when you’re facing health challenges or a new illness/diagnosis, because it can be a very daunting and stressful experience.
A typical definition of community is “a group of people with a common characteristic or interest living together within a larger society”. Regardless of what you’re dealing with, I would like to make this as relatable as possible and share some ways that you can feel less alone, and in fact supported. The best advice that I can give is to seek out your “community”. If you’re new to my story, I’m a parent living with Celiac Disease. To recap from last time, Celiac Canada defines Celiac disease as a common disorder that is estimated to affect about one percent of the population. It is a condition in which the absorptive surface of the small intestine is damaged by a substance called gluten.
I have been living with celiac disease since I was 18 years old, and am closing in on my 37 birthday this year, basically living without gluten (minus any accidental exposures), for half my life.
Lately, I’ve been connecting with many parents in the direct messages of my Instagram page that have told me that their children have recently been diagnosed with celiac disease and they are feeling overwhelmed. One of these accounts came from my lifelong friend, who is a talented gluten-full baker in her own right, but was lost and confused about how to pivot as a family and not make her daughter sick. As someone who has been in her shoes before as a young adult, I showed empathy and let my friend know that she is supported and not alone in this journey to improve her daughter’s health. I wanted her to feel empowered to make the very best choices for her family as they move through this period of transition.
When I was diagnosed with celiac disease, I remember feeling very lost and confused. Back in 2005, there was no Facebook community and resources were not as accessible. My late Mother was an absolute rockstar and did her best scouring the Internet, reading old school blogs, and books at the library to learn all she could about celiac disease. Nowadays, there are endless resources at your fingertips, you just need to figure out what might work best for you and your family. Here are some of my suggestions for building community below, whether it is you, your child or another loved one facing this new health challenge:
Friends, Family and Coworkers
I would first tap into your immediate network as they are likely the people closest to you that you trust the most. Perhaps you are the first in your family to experience this challenge, but if not it does not hurt to reach out and have a conversation. This group of people will want to give their time and energy to help you get through this because they love and care for you. Looking back on my friend that connected with me, I simply let them know that they were free to ask me questions whenever they arose.
Coworkers are also great to connect with because you may share a lot of time with them at the office, chatting over coffee or lunch. Naturally, it's another support network to tap into because they have their own family/friends and would easily be able to make an introduction.
If this is a child you are dealing with, perhaps a newly developed food allergy, are there other parents within the school community you can reach out to? Talk to teachers and the school administration. With technology at our fingertips, there might be group chats on Whatsapp strictly for parents of children at the school that might help foster connection. This could be beneficial for both parents and children alike and a great way to make a new friend.
Online Networks
This can be Facebook groups, online forums like Reddit or even on Instagram. I do urge a sense of caution here as there is a ton of misinformation online that is not always so easy to sift through. Wherever possible, try to find a group that is science-based and moderated, as fear mongering posts, or inaccurate information will be removed swiftly.
I personally direct newly diagnosed celiacs to the Celiac Canada page as there is typically a registered Dietitian that moderates the group on a volunteer basis. Instagram is great as well because you might find a health professional with a small cohort Mastermind/Course for the challenge you are dealing with. It also doesn’t hurt to connect with a local blogger or advocate that you admire as well. Simply send them a DM and say hello to connect. Storytelling/sharing can be a powerful tool.
Registered Charity/Foundation Pages
Another place you can look at is the local charity or Foundation of the particular cause/condition you might be dealing with. Not only will there be a ton of resources and stories of others, there might be free Webinars, support group suggestions, ways to volunteer and a charity event like a marathon or gala. It is entirely possible that some national organizations have local chapters too. Joining a local chapter will allow you to make some new connections close to home.
Local Health Food Stores
Have you ever taken a look at the bulletin board of your local health food store or read through their weekly newsletter or flyers? Sometimes they host Info sessions. You might be surprised at the type of seminar that is offered and it would be a great way to meet people in your neighborhood.
Trade Shows/Large Scale Events
If you live in a large city or close to one, you might find something that peaks your interest. For instance, in the gluten free community, there are many food festivals that take place annually throughout the Greater Toronto Area, where I live, and beyond. For people living with gluten related disorders, this is a great event to attend because not only can you connect with small businesses/vendors and support their products, but also you can meet many people that understand your lifestyle. There may also even be guest speakers and panels on topics that interest you as well.
Employee Assistance Programs
Here is another avenue that might not be used as often to build community, but is still a great resource to utilize. An EAP is a resource to utilize. An EAP is aprogram, through your employer, usually offered to full-time permanent employees. Depending on your provider, you might get access to a therapist and/or dietitian depending on your plan. As a parent, you can find some tips and tricks on how to deal with challenges, or how to best support your loved ones.
I’m sure there might be another avenue I missed but these are some key ways I feel you can build community. One thing to remember is that you are never alone in what you are dealing with, even though it can feel isolating at times. When you build your community, you will grow your knowledge, receive support, feel validated, and perhaps a sense of belonging or purpose.
Ashley runs a Gluten Free Mamas Group on Facebook, which is a supportive community geared towards millennial-ish women living with celiac disease or other gluten related disorders who are currently pregnant, are moms, or are trying to conceive. The group is small, but growing, and is filled with women that are curious about the best pre-natal vitamins to take, easy gluten free freezer meals, what to pack in their hospital bag, safe snacks for kids at school and more. She truly believes motherhood takes a village, which is why she created this space.
Find it by searching "The Gluten Free Mamas". If you’re interested in connecting with Ashley or have any questions, please email her at celiacandthe6ix@gmail.com or connect with her on Instagram: @celiacandthe6ix.
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