Action for ME: "How can we manage our wellbeing when interacting with others online"

Dolphin

Dolphin

Senior Member (Voting Rights)
[Wasn't sure where to post this]

www.actionforme.org.uk

Behind the screen

From InterAction 120, published autumn 2025 How can we manage our wellbeing when interacting with others online? SPEED READ In our digital...
www.actionforme.org.uk www.actionforme.org.uk

Behind the screen​

From InterAction 120, published autumn 2025

How can we manage our wellbeing when interacting with others online

SPEED READ

In our digital age, we can communicate in various ways. We can form relationships online that are meaningful, valuable and supportive. There are real people behind the screens. This has both benefits and challenges. In this article, we start a conversation about life online, with some reflections on how to manage our wellbeing in this environment.

www.actionforme.org.uk

Behind the screen

From InterAction 120, published autumn 2025 How can we manage our wellbeing when interacting with others online? SPEED READ In our digital...
www.actionforme.org.uk www.actionforme.org.uk
 
Since getting Covid in 2022, I seem to be more sensitive to online stress.

The way a couple of people on here have talked to me has caused me to lose sleep on a few occasions.

So these days, I've cut back on commenting here as a way of managing my well-being.
 
Dolphin said:
Since getting Covid in 2022, I seem to be more sensitive to online stress.

The way a couple of people on here have talked to me has caused me to lose sleep on a few occasions.

So these days, I've cut back on commenting here as a way of managing my well-being.
Click to expand...
A good reminder Dolphin, thank you. I am glad you are taking care for yourself and thank you for all your contributions. I have always had a fear of public speaking and posting on a forum like this gives me lots of anxiety. If I have ever said anything awful to anyone please, I am sorry. I don't hold any grudges if someone has been a bit off with me.
 
I sort of have less of an issue with this once I’ve realised it’s part of their magazine so is intended to be discussion ‘within the community’ and maybe there is also a variety of ages and familiarity with tech and social media and its drawbacks (and risks in the worst cases) etc before being thrown into being ill (that suddenly means you might never have ever dreamed of risking ‘getting close’ or so honest online until alternatives disappeared) that means warnings are worthwhile as well as issues being discussed in a ‘the thing with me/cfs is even this is energy draining’ type thing.

Though I don’t see the rest of the article so how much either is or needs to be me/cfs specific?

I do get worried if it’s a more publicly placed type thing and overall tone etc. Eg if someone is coming across a website for an me/cfs charity and gets the impression from the clutch of articles that what pwme need most is this sort of thing as it’s really what we don’t want from healthcare to end up with lessons in other things in place of practical support or better actual healthcare (like we get currently and I tended to get when needing practical advocacy from most people who would and should provide that because the cfs old guideline gave them licence to wheel out the nonsense -as if it’s just anxiety rather than the problems that were so real my life is now more wrecked due to being undermined accessing that help - because that was what they preferred to do instead normally).

And so yes that impression of us matters because I haven’t seen that issue change in how we get treated instead of getting normal, respectful help from other places (abd was shocked myself when I got faced with a deluge of it - and yes it was just ‘the label’ and the permission that gave and not ‘me’ that caused that, I’ve now found the few good old friends who confirm I didn’t change, it’s others that do when the power differential shifts) and if a website were full of this then it creates a certain impression that those who keep doing this take as confirming those misguided ideas/tropes that are really troublesome. And that’s been to me a huge added disability on top of my debilitating disability to have access to basic things removed by that misinformation lots don’t seem keen to drop (a lot of people prefer doing that instead of giving the practical support you ended up in front of them for, it’s awful to be repeatedly buried by and having to be polite and extract yourself from not ever getting said help you needed and should have got).

Are other serious illness websites full of things along the lines of lessons in (I think it’s different if the angle is from ill people themselves)l - but then the difficulty there is it becomes a debate, but there is a fine line from the school teacher tone issue) certain types of things whilst other focus you’d normally find for a serious illness is missing - in as far as the reputation for what the illness is and as we try and change from the ‘me/cfs is a personality type’ stuff of old guidelines.

Often I don’t use and look at these charity websites myself and know many other one who don’t , unless you are looking for some specific reason, normally help for something specific they often don’t offer but you look anyway. Or because of being pointed to it for a reason.

But for those new to the illness who don’t have it or just getting diagnosed then what’s on there will be looked at and give not just a big picture impression of ‘what that charities does’ but an idea of ‘what we need’ whether accurate or not . So I think that internal community stuff needs to be thought of carefully (and I hope/assume also covers other things too) but I don’t know how much/different the curation of the stuff for these ‘newer’ visitors is and would be intrigued to know if anyone visits this website more and/gets the magazine etc? Does actionfirME do a lot of this type of stuff?
 
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Dolphin said:
Since getting Covid in 2022, I seem to be more sensitive to online stress.

The way a couple of people on here have talked to me has caused me to lose sleep on a few occasions.

So these days, I've cut back on commenting here as a way of managing my well-being.
Click to expand...

I am so sorry to hear this @Dolphin. I am grateful for the articles you post and your comments.

I too find that some comments are unduly harsh at times.
 
it’s worth everyone bearing in mind that anyone, especially here, can be having a worse than usual day. I know from my own experience that I can be grumpy at times and this makes my filter less effective. Probably most of us have had rants

Thank goodness we do have functioning rules and mods here unlike social media.
 
Dolphin said:
Since getting Covid in 2022, I seem to be more sensitive to online stress.

The way a couple of people on here have talked to me has caused me to lose sleep on a few occasions.

So these days, I've cut back on commenting here as a way of managing my well-being.
Click to expand...

I too am sorry you have felt like this @Dolphin but I understand it and the wisdom of your decision to step back. I found the following a useful aide memoire from the A for ME article you posted above.

Working out your boundaries​

Boundaries matter and are important in managing all aspects of wellbeing.

Be clear about what you can and can’t engage with. Don’t be afraid to say, “I don’t have capacity to answer this right now”, or not to say anything at all.

Challenge your fears of missing out. You don’t have to read or respond to everything. If an online conversation triggers something unhelpful for you, give yourself permission to disengage from it.

If an interaction creates a stress response in you – be it agitation, nausea, tears – it’s taking enormous gulps of your precious energy. Take a break.

Sometimes closing the screen or putting the phone down temporarily can be the best option.

If you find a particular person unhelpful or don’t want to see them on social media feeds, remember you have the power to control what you see and you are perfectly within your rights to protect yourself. Blocking and muting are often options, and sometimes you can ‘snooze’ a person if you are finding them too much to cope with at the moment.

Where someone causes intentional hurt, block and report. There are ‘trolls’ online who will deliberately bait you for a reaction.

If you are part of a moderated community, such as our forums, contact the moderators immediately if you experience any kind of abuse from other users. You can also contact moderators if you are worried about the wellbeing of someone else.

It is not your responsibility to look after everyone else in an online community. Remind yourself of your own limitations when you are tempted to step in to help. Work out the boundaries you need to create for your own wellbeing.

Relationships formed online can be as profound as any. Many deep and lasting friendships can be formed. By practising the art of self-management and self-care, many find real value, support and resources in and from online communities.
 
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