My Experience with Online Community Groups + HHT: The Good, the Bad and the Ugly (Part 3)

Introduction:

 

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 Part 3 in 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 3: The UGLY

 

Misinformation

A risk of asking medical advice to a group of non-medical people is getting bad advice.

Now stop. Read that sentence again. Let it sink in. Because this is a huge problem with our community groups.

I would always use caution when asking for advice about a serious HHT complication or symptom. If you feel called to answer someone’s question, please be sure you are giving accurate information from a reputable source.

The Cure HHT website has a resource for almost every topic that is related to HHT and everything on the website is backed by scientific research. I love seeing medical articles posted in these groups because it helps dissolve the misinformation quickly with credible sources. And if you aren’t sure as you are posting something, qualify it or ask questions first!

 

Projection

This is perhaps one of the hardest things about online support groups.

It is hard to maintain perspective when you or your loved one is faced with a disease and sometimes a lot of uncertainty. I have experienced this myself and it is really difficult to come back to reality.

Sometimes I read people’s stories on the HHT community pages and I think about my two babies and naturally project these stories onto them. I think about them having the same painful and scary symptoms. I think about them having an unexpected stroke, needing a liver transplant, having a brain abscess, or bleeding from their eyes.

This is not a healthy way to think.

It is so important to remember that each person with HHT experiences different symptoms. The best we can do is be aware of what can happen and know how to screen appropriately so we can prevent these things from happening in the first place or be able to treat them if they do occur.

 

Anxiety

Going along with projection, if a community group is hurting you more than helping you, don’t be afraid to unfollow or leave the group. You don’t have to leave it forever, but it is good to get a break every now and again if you need it.

When I was pregnant with Theo, I started dilating and going into labor at 22 weeks. I had to have a procedure done called a cerclage and I decided to join a cerclage support group online. This was a risky procedure and sometimes it does not prevent labor from happening. I was seeing stories of women losing their babies or having them early and spending months and months in the NICU.

They were using the group as support, for prayers, for advice, and stress relief and getting a lot of much needed help. However, this was way too stressful for me, and my husband made me leave the group because I could not stop projecting other people’s situations onto mine and it was causing a lot of anxiety.

I share this with you to hope that if you are in a community support group and you are experiencing more ‘ugly’ than ‘good’, maybe you should turn off your notifications, unfollow, or leave the group and join again at another time.

 

Final Thoughts

Overall, I love the HHT support groups online! Through the good, the bad and the ugly, I have never felt more connected to this global HHT community.

I have met some wonderful people, learned a lot of new things, and I have asked many questions and gotten great answers.

I m always thankful for a community like ours!

 

Click here to Read Part 1 in this 3 Part Series.

Click here to Read Part 2 in this 3 Part Series.

2 Comments

  1. Cristina on October 21, 2018 at 8:20 am

    Very good article Cassi, thank you very much foro sharing.

    • Cassi Friday on October 24, 2018 at 6:02 am

      Thank you, Cristina! 🙂

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