It’s happened to me many times. I join an online group, forum etc. looking for help and answers, and while there’s often nice people who reply, there’s commonly someone rude, maybe arrogant and needlessly nasty, as well.
Most commonly, these are Facebook ‘support’ groups. You post a simple question and members, hidden behind a phone or keyboard, get nasty and abrupt with you.
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 ‘deserve to be sick’.
Maybe you’re thinking that these people sound like trolls? Nope. Most commonly they’re the group ‘admins’. How horrid 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 and find the group helpful, spew hateful words 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.
These nasty people often believe that they’re never wrong. They’re always right and if you suggest they may not be or have an alternative view, then you’re stupid. They jump on you quickly to make you look stupid, just to prove themselves right all the time. What is that achieving? What they’re 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 correct knowledge?
Some groups are based on the fact that you must go gluten free. Others, you must only use NDT and they refuse to help those on anything else, especially Levothyroxine.
For some people, going gluten free hasn’t helped them, or their doctor won’t prescribe NDT and they don’t feel comfortable sourcing it themselves. Why are they made to feel awful for that?
Each to their own and all that.
I sourced NDT myself, but I don’t expect everyone to be happy doing that. We’re all different. We have to respect our own choices and decisions. Not everyone can afford private testing or healthcare, but a lot of groups go on about ordering your own lab work.
In the group I set up, we acknowledge that we’re not 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 some people making others 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! None of us in my group are experts. None of us are right all the time or know 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, and that’s that. That’s all!
Other groups I have been in/am currently 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.
I want people in my group to feel comfortable to ask whatever they need and feel like the people who answer are almost 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. We hate doctors who do it.
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 we all need.
Aren’t we supposed to be helping each other?
Do your research, absorb the 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.
Rachel, The Invisible Hypothyroidism
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