About The Author: My name is Sydney and I’m 19 years old. I’ve been diagnosed with Dysautonomia, EDS, GI issues, and Mast Cell Disease. I share my journey on my Instagram to try and help others in a similar position to me. You can follow me at @chronically_sydney!
My Diagnosis Journey
Becoming chronically ill can mean many different things for different people. For me personally, my chronic conditions affected my life drastically when I turned 15. I was an extreme athlete who played sports year-round and I was attending my first year of high school when I started to get sick. After finally being diagnosed and things had progressed, we knew I wasn’t going to be strong enough to go back to school my sophomore year. I had to quit all of my extracurriculars and sign up for an online schooling program. In quitting my sports teams, I lost almost all of my friendships and became very socially isolated. Being the independent person I am, I didn’t strive to rekindle those previous relationships because I knew none of my friends would be able to understand the complexities of my situation. Plus, at the time I honestly didn’t have the energy to worry about anything other than my health. After a few years into my journey with chronic illness, I now have many friends in the community and a very large support system which has been vital in my healing process. Most of my friends are also chronically ill so they understand everything I am going through and we have connections unlike any other.
The Importance of Community
Over the last few years, I’ve learned how important it is to surround yourself with other people like you no matter what age because no one should feel alone in this journey. There was once a time when I was sitting in the waiting room for an appointment and I just so happened to have an NJ tube, a feeding tube, in my nose. A little girl, about five years old, walks up to me and tells me “you know I used to have one of those but now I don’t anymore, I have my tubie in my tummy.” I'm now very close with her family and get to see them every time they travel down to come to our local children’s hospital. An interaction like that may seem small but it truly isn’t—it’s a huge thing for both that child and her mom to see another kid like theirs who is older and thriving and doing what they want; that’s huge for them and it almost makes them feel more secure and safe and like everything is going to be okay. I have been able to meet many little girls and boys in similar situations to me and I’ve gotten to spend a lot of time with them and my hopes are that I can teach them to feel confident with their medical devices and make it known that there are many people out there like them and even though they may be different from the kids they play with at school when we’re together we’re all different in a wonderful way. One of the ways I get to meet many of these families is by volunteering at my local children’s hospital and Ronald McDonald House.
I also have friends that are my own age or even older that I have met through a local support group I attended. There was once I time when I was in the teen support group and it was a small group of girls ages 13-18 and we were all talking and comparing some of the horrible tests we’ve had to go through and we found out that all 6 of us had all had colonoscopies and we laughed about it for like ten minutes because where else are you going to find a group of girls who have all had colonoscopies?! Something like that can be embarrassing to talk about or even make you feel like an outcast but when you find your group of people who have gone through the same thing it is comforting and you don’t have anything to worry about because they just get it.
Finding People Who Can Relate
Another place I have been able to make many friends is online through platforms like Instagram and Facebook. Online friends are just as good or even sometimes better than ones in real life! There are many influencers out there who share their stories on Instagram and many of them are very friendly and are always willing to talk or help someone out. I have made so many great friends through Instagram and I have even gotten to meet some of them. Facebook is a place that is known for having many support groups which can be very helpful if you have certain questions you’re wondering or just want to meet others like you. They have groups for pretty much everything: feeding tubes, central lines, service dogs, dysautonomia, autoimmune diseases, GI problems, and more. And if you can't find one, you can always try creating your own page or group to spread awareness and build a community of people living with the same condition!
Tips For Finding Friends:
- Look for support groups both local and online
- Join Facebook groups (search the name of the condition you’re looking into)
- Reach out to other chronic illness warriors on Instagram
- Use hashtags when searching on social media platforms (#portacath, #feedingtube #chronicillness, #autoimmunedisease, etc.)
- Look into organizations that are for your specific health condition and reach out to them because they might have a local branch near you (Dysautonomia International, Lupus Foundation, U.S. Pain Foundation, Pediatric Pain Warriors, etc.)
- Ask your doctors office if they have any information on where you can meet others with the same condition as you
- Volunteer at your local hospital or Ronald McDonald House
- Most health conditions have some kind of awareness month/week/day, find out when yours is and participate in the activities they might have
From one spoonie to another, I hope this helps! You can connect with me on Instagram at @chronically_sydney.
If you are looking for more resources and support surrounding chronic illness, check out our other blogs:
- 10 Things Chronic Pain Taught Me
- Chronic Illness Guide: What To Pack In Your Backpack
- Working Full-Time With A Chronic Illness
What are some other ways to find friends in the chronic illness community? Let us know in the comments or email us at firstname.lastname@example.org. We love hearing from our community members!