Alright, lets start with the 4 W’s.
What? Chronicon 2019
Where? The Big Apple
When? October 28, 2019
Who? The most inspiring, uplifting and empowering group of spoonies
A few weeks ago I attended Chronicon, the first-ever chronic illness conference, in New York City. For those of you that don’t know, I’m primarily an Event Planner. I can’t remember the last time I attended an event as a guest. In fact, I have a habit of helping out even when I’m a guest. But when Chronicon came along, I knew I had to attend, especially because this was the first of its kind. Was I itching to help out? You bet I was! But, alas, what can you possibly do from across the border?
Any event that starts with the audience being thanked for giving their spoons just to attend the event is a winner from the get-go! The opening remarks by Nitika Chopra, the beauty and brains behind Chronicon, cultivated a safe and sacred space. Chopra spoke about fears that resonated with everyone in the room – the fear of isolation and introduced us to the day ahead that was going to be nothing short of authentic and healing.
When I say they paid attention to details, I mean they paid attention to details! Everything from the aesthetic, to the most allergen friendly meals, bags full of healthy snacks, luscious gift bags, delicious lattes served in recyclable paper cups, scholarships for anyone in need of financial support, and a live stream for those that weren’t able to attend in person.
Related: 9 Words You Need to Know From the Chronic Illness Warrior’s Dictionary
Related: 8 Things People With Chronic Illnesses Want You to Know
With Chronicon’s core values being integrity, inclusion and inspiration, the event was broadreaching in scope, thereby, providing a little something for everyone in the room. Topics included the challenges of living with an invisible illness, how to advocate for yourself at your next doctor’s appointment, the difficuilties of dating with a chronic illness, friendships with people who aren’t sick, tools for family and friends of those with a chronic illness, as well as navigating various nutritional requirements. At panels throughout the day, speakers shared their personal stories, gave advice and recommendations and most importantly, provided a sense of belonging.
After soaking up all the amazing content delivered at the conference, here’s a list of my top three takeaways:
Most people are well intentioned but they just don’t have the right language. What exactly is the right language though? Suleika Jaouad, an Emmy Award-winning writer, a cancer survivor, and also one of the speakers at Chronicon 2019 stated that though she has been cured of luekemia, the word survivor doesn’t feel right due to her on-going symptoms. She is still on the look out for the right word. In the same manner, some people take offense to being referred to as disabled and would rather be called differently abled. The right language, therefore, isn’t binary – it’s more personal which means it’s different for everyone.
You might find that your loved ones choose to stay quiet rather than saying anything regarding your illness. That might be because they don’t know how to navigate the ins and outs of this “in-between” grey area, and neither do they know where you draw the line. At that point, it is your responsibility to help them by giving them the language and letting them know that they can actually start off by merely saying they don’t know what to say. Since language varies by each person’s preference, it’s your job to let them know what you consider appropriate and what you consider inappropriate.
There are times your loved ones want to support you but just don’t know how to because they personally haven’t experienced what your life is like living with a chronic illness. This is where communication plays a huge role. You have to play your part by conveying what you’re going through, educating them on how you want to be treated and what they can do to help you. In doing so, you would also be making a difference in the chronic illness community because the next time they come across someone going through an illness, they would have a better idea of how to navigate that relationship.
Chronic Pain is not one size fits all. Everyone experiences it differently and has their own coping mechanisms. For this reason, surrounding yourself with the right people is very important. Diversifying your friends group – being friends with disabled people and people with chronic illnesses change your experiences. It’s the difference between getting empthy or sympathy, being understood or misunderstood, and feeling loved or feeling like a burden. Human connection is very powerful; it can have a huge impact on you, both negative and positive. Op for the latter and you’ll feel elevated, empowered, and uplifted.
“You matter.” One of the strongest sentences I’ve heard in a while! Nancy Carl, Healthline’s Influencer Marketing Manager looked us right in the eyes and said that to each one of us in the room. Something so simple, yet it touched so many of our hearts and made us all feel seen and heard. And that is it! I don’t think I can describe Chronicon any better and to be honest, I don’t think I am doing it justice by trying to sum it up in words because the day consisted of much more than just that. To get a deeper sense of the aura inside that room, sprinkle lots of love, warmth, laughs, tears, hugs, and genuine connections!
Lastly, I just want to give a big shout out to Nitika Chopra, as well as Healthline Media for dedicating their hearts to this event. Their hardwork and passion was visible in every inch of that room, every second of the day.
Oh, and of course I’m going back next year. Wouldn’t want to miss it for the world!
If you have any additional questions about my experience, you know where to find me!
Love and spoons,
Will there be a Chronicon 2020? My wife has fibro, anxiety, and depression and this sounds like a great event.
Yes, there will be =) The dates haven’t been announced yet but I’ll definitely be posting about it on my Instagram @fabulous.and.fatigued! You can also follow their official IG account @chroniconofficial for any/all announcements. I hope to see her next year!