Chronic illness communities and fakers

I have heard a lot about people who lie about chronic illnesses online from other bloggers and people with chronic illnesses on social media sites but up until yesterday, I hadn’t had a lot of experience with this.

Alarm bells always start ringing in my head when someone REPEATEDLY tells me how bad their condition is. Normally, people don’t have to specifically say “I have really severe asthma” because you can tell from the meds that they or on, or how often they are in hospital, and plus it isn’t normal for a person who actually has a chronic illness to boast about how bad it is. Yes, people who have severe chronic illnesses share their experiences online, or use social media sites for support BUT there is a huge difference between LEGITIMATELY ill people and people who lie for attention. And, quite frankly, I do not want to deal with anyone who lies about their illness for attention.

Compared to other bloggers, I haven’t really been on the scene all that long, and so I am still fairly new to all this “lying about having an illness” stuff, but when I do come across someone who is BLATANTLY lying to me, I find it extremely insulting. I am not stupid, I know that people who have severe asthma tend to be on certain medications, and have protocols in place for when they do go into hospital. I can rattle off a whole heap of meds for Asthma and Rheumatoid Arthritis/Juvenile Arthritis off of the top of my head and I know the doses and indications of those meds. Anyone who knows me will back me up on that. It offends me when people think that I know nothing and try to take advantage of that, because I do know things, I just don’t often broadcast how much I know to the whole world.

Yesterday, an individual on twitter (who I shall not name) tried to convince me and a fellow person with asthma that she had almost had a fatal asthma attack 3 weeks ago but didn’t go to the hospital, even though she knew it was a bad attack. Who in their right mind would do that?! On average, Asthma kills 3 people in the UK EVERY SINGLE DAY! If you are having a severe asthma attack, you don’t just hang around and wait for it to get better on it’s own. You cannot survive a severe asthma attack without treatment. This tweet was sent to us after I had seen a previous tweet from the same individual telling another person that she’d had that same attack 1 week ago… so how can someone have the same attack 2 weeks apart? NOT POSSIBLE!

This individual also claimed to have the severest asthma her doctor had ever seen, but I really doubt that, especially since her GP thought that Flovent on the dose for a young child would be fine for her. I do admit that you get some GPs who can be clueless about asthma but if she really had severe asthma, then that certainly would not be the dose for her and even clueless doctors would know that. But what really alerted to us to her lies was how she claimed to have an asthma attack so severe that she went without oxygen for over 5 minutes and came out of it without any brain damage, I would say that going without any oxygen for over 5 minutes without any serious effects is impossible. I have always been taught that if you go without oxygen for over 7 minutes, your chances of survival are pretty much non-existent. We confronted this girl (in a perfectly polite manner, may I add), explaining how we didn’t think that everything she was telling us was true and blocked her. Why should we have to deal with her tweets? Some of which were quite rude. After our confrontation she deleted all of her tweets to us, which I think is more evidence that she was lying to us, and then she tried to accuse us of lying about having asthma… Although we didn’t feel the need to justify this with a comment, and we had already blocked her so she wasn’t going to bother us again.

Some people might think “so what, someone lied to you about having asthma” but it isn’t just asthma. The same goes for any chronic condition, why should we be bothered when someone lies? Because it isn’t just lies! These people worm their way in to our communities, abuse our trust and live on our support. These are the people who we rely on,when in fact they have absolutely no clue how we feel. Chronic illness communities are strong and delicate at the same time, we NEED each other because it isn’t often people know how we feel but when people lie about having conditions it affects EVERYONE in that community. Everyone is more on edge, more, worried about drawing on other peoples strength because one attention seeking person has made everyone put up their guard. They have single handedly pushed people to become slightly more isolated, which is the opposite thing that people with chronic illnesses need. And after that person has gone, after they have been exposed, and after our communities have mended we still remember the hurt that we felt when we realised that they were lying, and we know that it will happen again. That is the hardest thing about the whole situation, knowing that it will happen again.


9 thoughts on “Chronic illness communities and fakers

  1. People who lie about a condition make me feel physically sick, almost the same way that people “compete” about who has worse asthma than who. None of us ask to be so poorly and I don’t know anyone who given a choice would keep their asthma instead of something else.

    1. Some how I think it’s even worse when people compete to have the worst asthma… We all know how bad our own asthma is, you can’t compare it to other people’s! But I agree anything about lying about asthma and other chronic illnesses make me feel ill! I was up most of the night thinking about what had happened

  2. I was on a facebook group for RA. Oh my the childishness! It amazes me how people will attack others behind the veil of the internet. My husband and I are always commenting on how it seems the progress of the human into maturity never seems to get past high school level in so many ways. I’m too trusting I guess. If someone says they are sick I believe them. It doesn’t impact my life one way or the other if they are lying. I just hope they get what they need from their online experience. Oh, and I dropped out of the FB group. My life is dramatic enough as it is. Great post!

    1. I am in a Facebook group for RA too but mine is extremely well managed and everyone is nice. According to other people in that group, this is the best one they have been because no one competes with each other… It’s a shame though, because sometimes communities are so close and other times people are so distant from each other, even though they all share the same illness

  3. Wow. I’ve been chronically ill for two decades now (not asthma, but Myasthenia Gravis) and never have actively participated with an online group, though I’ve joined several with nothing but good intent. Now I’m wondering if I want to do that…

    1. The majority of people I have met have been absolutely wonderful! They have been supportive through the hard times and are really good fun just to chat to… In my 7 years I haven’t been well I have met 2, possibly 3 people who have been lying although 1 person was someone that I actually knew in real life. Yesterday was the only person I have dealt with personally, and it was hard and it does hurt but I think, personally, the benefits of joining a community are so enormous that the risks of meeting someone who is lying are totally outweighed… I think I would regret it if I wasn’t a member of a community, in face I’m annoyed that I didn’t join sooner.
      In every day life there are going to be people who lie, and online is no different. But talking to people who really understand how your feel has helped me so much, you just have to be wary of the people who sound a bit fishy.

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