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My Experience with Online Community Groups + HHT: The Good, the Bad and the Ugly (Part 2)



With the prevalence of social media, it is almost impossible not to be connected these days. One of the most popular ways to connect with others is through community support groups, like the ones for HHT on social media sites.

Most of the time, I think these groups are what our HHT community needs. They provide hope, camaraderie and education. Then there are other times when those nice thoughts turn to irritation, education turns to misinformation, and they can stir some controversy.

I have thought a lot about these types of groups and how to best use them because I find real value in them! Cure HHT’s Community Engagement Manger, Ally Clancy, helped me organize my thoughts and gave me some great tips for utilizing our online community.

Here is a 3-part series on how I feel about HHT online community support groups, and some tips for how I have been able to find real connections with others in the HHT community.


Part 2: The BAD


Judgment and Impoliteness

Sometimes people can be a little rude and judgmental in online groups. Whether this is intentional or not, it is very difficult to convey tone and expression using just words when writing quickly, especially on a platform like Facebook or Instagram. While I don’t find it often in our HHT online support groups, this negativism does show up from time to time.

I don’t know the bulletproof solution to stop this from happening, but here’s my main tip: remember that HHT impacts everyone differently, and someone’s journey with HHT may be very different from your own. Finding empathy and reminding yourself of all the reasons why someone may need help from this group of people will ultimately create a safe space for all.

Do you remember all the good reasons why these groups exist from my first part? To jog your memory, my favorites are community, friendship, advice, support, new resources and encouragement.

So, stay positive people! And, in a world where you can be anything, be kind.


Anecdotal Evidence

Even though advice and resource sharing are some of my favorite things about social community groups, anecdotal evidence can be one of the most dangerous aspects of these groups.

While it is important to share information with one another, it is also very important to remember that this information is anecdotal or ‘folklore’ until it is evidence-based through research. Just because one or two people with HHT figure out they have another shared disease and wonder if the two are related, it does not mean you are at risk for that disease as well. There are over 60,000 people in the United States with HHT. Statistically, there are many chances for multiple people to have more than one medical condition in common that are completely unrelated.

If you have a hunch about your theory or theories, you can always team up with these people to support one another and share resources.

Just be sure to go to trusted sources for your HHT management and treatment. I am always on Cure HHT’s website for new resources, and am sending anything I learn from HHT webinars, conferences and other events to my people!


Click here to read Part 1 in the 3 Part Series.




1 Comment

  1. Cristina on October 21, 2018 at 8:09 am

    “in a world where you can be anything, be kind.” Very good advice. Thank you

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