New Year/New You – 10 active online support groups for learning ways to live well while living with a chronic illness

2016 is a brand spanking new year!

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Family pictures on the beach at sunrise – photos by Cynthia Lawrence

I was more than happy to say goodbye to 2015 and what a better place to do so than in the Florida Keys — exactly where I was when I jumped into the new year. My husband and I also celebrated our 13th wedding anniversary on 12/27. 

Although, I‘m not one for New Year’s resolutions (IMO – every day is a new day to start over), I am a huge fan of personal growth and facing the mirror each day, in order to be the best person I can be. I’m also a huge fan of striving to live as well as possible while living with a chronic condition, such as Ehlers-Danlos Syndrome (EDS).

When I was diagnosed with EDS ten years ago, social media was non-existent. There were a few chat boards and AOL chat groups, but the only online EDS support group was through EDNF. EDNF’s chat boards were associated with their website and offered a great option for so many; however, I quickly learned that chat boards were not so great for my overall health and well-being. Fast forward to about 2 years ago, I discovered Facebook groups after I had already started my Strength/Flexibility/Health/EDS Instagram profile. I was a bit late to the party on the Facebook group bandwagon, yet my feeling was still the same – support groups aren’t my thing, online or in person. That does not mean that I feel as though there are not very good support groups, or ones that I’m not personally involved with, because there are. My issues with support groups usually stems from the overall tone (more negative vs. focusing on the positive – not my personal preference), and because I’ve seen way too many people spiral downward after spending way too much time in groups – something I have to watch for myself.

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If you are interested to read more about what I’m referring to when I mention “the downward spiral,” you can read – The EDS Spiral.

I eventually came across an EDS Facebook group called the Ehlers-Danlos Athletes (link is below). People in the EDS Athletes groups focus on what they can do each day, versus what they can’t. Many people run marathons, compete in triathlons, and participate in just about every type of activity possible. Finally, I had found my people!

Many people in the group were also an extension of the active EDS group that I found on Instagram as well. Obviously, my opinion has changed a bit about online groups. Even still, I often caution people to be mindful about how much time they are spending online and in support groups and chat boards, as well as how the overall tone impacts them emotionally, physically and spiritually.

One thing I have recognized, is that online groups are here to stay. I figured that if I can’t find the type of groups that I would want to participate in, or ones that are specifically tailored to the need of someone I’m working with, then I should create them myself.

IMG_0572Below are 10 active online support groups for learning ways to live well while living with a chronic illness. Most are groups that I started, but others are not. A number of my groups are newer and have only recently started adding people. I’m not sure if all will stick, but if you are interested in seeing what they are about, click on the links below. Most are more specific to a certain type of activity or level of activity, versus general activity and not all are for those with EDS. Anyone can join! There’s also a group for anyone (EDS, chronic illness or not), and most start with “Just 5 Minutes,” in order to make my groups easier to find.

All of the support groups listed below have a positive focus, and are places where you can feel safe asking questions with no judgements. All groups also focus on what we can do, versus what we can’t. The groups that are more tailored to those with EDS and/or chronic health conditions, focus on helping people find the best way to live well while living with a chronic illness.

I started a parents of EDS kids group, a group tailored to those who want to focus on going from being in a wheelchair to walking, and a group for anyone looking for support and motivation to live the best life they can (EDS or not). Not all groups are activity focused and we know that life isn’t rainbows and butterflies all the time. We focus on the positive, or ask questions on how to better the negative.

Personally, my overall focus in life is on being healthy and active, the mind/body connection, raising healthy and grounded kids, yoga (and training to become a yoga instructor), and giving daily to those who need it most. I firmly believe that you find the strength to persevere, when you are helping others while walking through your own storm. Or, maybe that’s my own really good coping mechanism, but it works!

Here is a list of the Online Support Groups:

Ehlers-Danlos Athletes

Masto/MCAD Walking & Exercise Warriors

Just 5 Minutes – Motivation for life & staying active (for anyone, not just those with EDS).

Just 5 Minutes – EDS Wheelers to Walkers (focus is the very basics of how you build your strength little by little, baby step by baby step)

Just 5 Minutes – Raising Active and Athletic EDS Kids

Just 5 Minutes – Invisible Strength (Our Stories Of Strength – support group for anyone living with a chronic of invisible illness who has a story of hope, strength & perseverance).

Just 5 Minutes – Moving Naturally with Hypermobility (focus is on content shared in the Hypermobility Seminars that I give, Physical Therapy & Natural Movement for all Hypermobility syndromes)

Just 5 Minutes – Wellapalooza (Focus is on Wellapalooza Integrative Health & Wellness Conferences & Integrative HealthCare)

The Hypermobile Yogi – Strength/Flexibility/Health/EDS (Just 5 Minutes)

Yin Yang Zebras – Alternative Positive Support for EDS (Ehlers-Danlos Syndrome)

If you have questions, please feel free to fill in the contact form below, or send an email to: Kendra@edswellness.co.

I hope you decide to join us! Cheers to a new year and a new you!

– Kendra

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