Get Yourself Connected
Last updated: May 2022
Let’s face it, everyone loves me!
Yes, this is going to be one of those articles where I talk about self worth, popularity, and building your social network.
But, in seriousness, when it comes to long lasting and valuable relationships, there is no group better than Spoonies.
(What’s a “Spoonie”? Read: “The Spoon Theory” by Christine Miserandino)
To summarize, “Spoonies” are any people with a chronic illness that limits the amount of energy they have throughout the day. If you have ankylosing spondylitis or axial spondyloarthritis, congratulations, you are a Spoonie!
And when it comes to knowing and interacting with people who truly “Get It”, Spoonies are the best friends you can have.
When you say “I can’t make it, I have a date with my heating pad.” They get it! When you say “Sorry, I've been on the phone with insurance all day.” They get it! If you are looking for information about a treatment, or remedy, they are the ones who can help you.
Yes, it really is true...All my best friends are Spoonies.
And, over the years of being a patient leader and advocate, I have collected my fair share of Spoonie friends.
But, here you are, reading this and thinking “But Jed...How do I make more Spoonie friends?”
Listen up, because for the first time ever, Im going to share my secrets to making (Spoonie) friends and influencing the medical community.
Chat it up!
I’m going to give a shout out to my Spondy Sister, Dawn Gibson and her creation #SpoonieChat. A few Wednesdays a month, Dawn posts questions about healthcare and other Spoonie issues on Twitter and people answer them. And through that, friendships are made.
I would not be where I am today if it weren’t for #SpoonieChat because that’s when my work in AS awareness went from a “Me” to a “We.” Through #SpoonieChat I met so many Spondys and other chronic illness superstars and through them I learned about all the different opportunities I could be a part of to better represent our community.
But, you don’t have to wait for Wednesday! There are always opportunities online to meet and interact with other people in the same situation as you are.
Personally, I think Twitter’s open forum format is the best for meeting other people. Just don’t set your account to private, because nobody will ever see you. Just make posts about AS or any situation that is important to you and follow anyone who likes what you have to say.
Search for topics, respond to questions, and follow even more people. The more people you follow the more people who will follow you back and the bigger your social media footprint.
Instagram is also a good place to connect with Spoonies if you are better at showing your AS life than writing about it.
Just interact as much as you can, and block any Trolls who might come your way.
Hit up the non-profits
There are at least 7 organizations I work with on a regular to semi-regular basis. And several more I have done one time projects with. Whether it is writing, fund raising, speaking or any other type of awareness project, these groups are always looking for fresh voices.
I could tell my diagnosis story for the 75th time, but wouldn’t it be better to hear yours?
Search online, look at their social media, get to know other people who have worked with these organizations and then reach out and make yourself available.
There is always a need for guest bloggers. Even if it isn’t a paid opportunity, writing an article for one of these groups will get your name out there. And the more exposure you get, the more relationships you will build.
Represent your community
There was a time when attending conferences was all the rage (any time before February 2020).
And maybe you are reading this at a time when COVID-19 is a distant memory and you can fly around the world without a vaccination record, and there is no fear of being in a ballroom with 500+ other people (most of whom are huggers).
But, if you are looking to make Spoonie friends, attending a conference and spending a weekend with people who represent your condition or others, is the best way to go.
After meeting other people and getting involved with some organizations, the opportunities to meet other Spoonies in person (or virtually) will become more available.
I've attended smaller meetings centered around Spondylitis and ones where 13 lucky people from across different disease groups were asked to serve on a board of advisors. And I have attended gigantic week long Spoonie extravaganzas where you leave a totally different person than you arrived.
And all of these meetings only required a little research and an application.
But, the people I met have become life-long friends.
You’ve got a friend in me
Not just me, but in the whole Spoonie society!
We are out there, willing to make new friends every day.
Thanks to the miracle of social media, you are literally able to have hundreds of friends all across the world. And thanks to Twitter chats, blogs, vlogs, and conferences you are able to not only meet people, but also spread the name of Spondylitis or any other condition or interest that you want.
Whether you are an extrovert or introvert, an educator or a campaigner, there is a group for you in our big and beautiful Spoonie family!
Have you ever had to take a leave of absence from work due to your symptoms?
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