Aren’t those sharing the experience of a mutual health condition supposed to be supportive of one another? You would think so!
However, the following scenario has happened to various many times:
I join an online group or forum, looking for help and answers, and while there’s often friendly people who reply, there’s commonly someone rude, maybe arrogant and needlessly nasty, as well. Most commonly, these are Facebook ‘support’ group members. You post a simple question and people, hidden behind a phone or keyboard, get nasty and abrupt with you.
Sound familiar? I know I’m not the only one.
They think it’s their way or the highway. If you don’t agree with what they say, then you’re ‘stupid’, ‘going to stay sick’ or even ‘deserve to be sick’.
Maybe you’re thinking that these people sound like trolls? No, in fact, most commonly they’re the group administrators. How awful is that? The people who set up the ‘support’ group and are in charge of making sure it’s moderated well and people are comfortable, finding the group helpful, are nasty, arrogant and upset the very people who have opened up to them for help.
They seem to forget that people come to them, joining these online groups and forums for help, because they also suffer from the same problems and just want to feel well again. For many of us, opening up about it is really hard. Doing it to a group full of strangers makes it even harder for some people.
We Have To Be Openminded
These nasty people often believe that they’re never wrong. They’re always right and if you suggest they may not be or even have an alternative view, then you’re put down.
They jump on you quickly to make you look stupid, just to prove themselves right all the time. What is that achieving?
What they are forgetting is that what might work for one person, might not work for another. We’re all different! Shouldn’t we be sharing what has helped us all, rather than just what certain people deem to be the only way?
Some groups are based on the fact that you must go gluten-free when you have hypothyroidism and/or Hashimoto’s. Others say that you must only be on NDT medication and they refuse to help those on anything else, especially T4-only medications.
For some people, going gluten-free hasn’t helped them, or their doctor won’t prescribe NDT. So now what?
Each to Their Own and All That
We’re all different. We have to respect others’ own choices and decisions.
In the online support group I set up, we all acknowledge that we’re not medical professionals or experts. No one is better than anyone else. We’re all here because we share the same health condition and just want to be feel better. We’ve sought each other out for help.
So why are others making people feel uncomfortable or regret that step forward they’ve made?
Shouldn’t we be seizing this opportunity to educate others, in an understanding and polite way, being patient and realising that everyone is different? It’s really not hard!
No one is are right all the time or knows everything. We are all just thyroid patients, having a rubbish time and trying and wanting to get better. We share what we have learnt by experience or have read.
Other groups I have been in are strict and arrogant. They miss the fact that if they make people feel uncomfortable, through their need to be right all the darn time, then people won’t use their group and this creates a bad reputation, as well as upsetting someone who is already going through a hard time. They’re not helping people but just setting them back. Which is why I set up my own support group.
Let’s Foster a Supportive Thyroid Community
I want people in my group to feel comfortable to ask whatever they need and feel like the people who answer are like friends to them. We don’t judge, we don’t get nasty and we don’t say someone is wrong or that only one way is right. We respect all views and opinions.
Doctors treat us like we’re all the same when we know we respond to things differently and should be treated like individuals, so why are so many online groups and forums doing it; acting as if we’re all the same and there’s only one viewpoint and correct answer? They should be trying to break that.
It’s sad when people who should be helping each other and supporting each other behave in a nasty, arrogant way. All they are doing is driving people away from the help and support they may need to get better.
Aren’t we supposed to be helping each other?
So do your research, speak to others, absorb information and decide what is best for you. Give things a go, work out what works and don’t compare yourself to others. We’re all different.
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Rachel Hill is the highly ranked and multi-award winning thyroid patient advocate, writer, speaker and author behind The Invisible Hypothyroidism. Her thyroid advocacy work includes writing articles, authoring books, producing her Thyroid Family email newsletters and speaking on podcasts, as well as being a founding board member for the American College of Thyroidology. She is well-recognised as a crucial and influential contributor to the thyroid community and has a large social media presence. Her books include “Be Your Own Thyroid Advocate” and “You, Me and Hypothyroidism”.