Why doesn’t Bear have a Facebook page?

Recently I’ve found myself having a lot of conversations with people about why Mr Happy and I deleted our facebook accounts. And each time, I wish to myself that I had already posted this explanation, so I could just share it with the person I’m talking to.

I wrote this post two years ago to answer a question that was being asked frequently. But then my health took a nosedive, and I didn’t have the energy or brain power to blog anymore. So this post just hunkered down in my drafts folder. Every time I’ve considered posting it I’ve thought, “No, it’s been too long since my last post. That’s a weird post to start back with. I’ll just wait until I’m a bit better. Then I can write a few other posts and this one can be shared after those”. 

But it’s been two years, and that “bit better” hasn’t happened yet.
So I’m sharing it now, and then retreating back into hibernation.
Hopefully ‘winter’ will be over soon, and I can get back to regular blogging.

Missing you all,
xx S.

Why doesn’t Bear have a Facebook page?

It’s annoying, I know! Facebook is an awesome way to keep up to date with your favourite pages. They make it really easy to ‘like’ a post, comment on it, or share with friends and family. Bear would love to have a Facebook page, because more people would find our blog, learn about dysautonomia, and interact with us!facebook-140903_1920

But, in 2015, after Facebook yet again set our personal details to public without us realising, Bear did some research into Facebook’s Terms and Conditions, and Data Policy. We didn’t like what we found.

We didn’t like how Facebook handles our privacy. We found that Facebook can change their privacy policy whenever they like, notifying us only via the Site Governance Page 1 (did you even know that was a thing?!) and that our using Facebook constituted agreement to those changes. That resulted in us often ‘agreeing’ to policies we weren’t even aware had changed, which (to our horror) sometimes meant our personal information had been left exposed.

We didn’t like that Facebook was telling our friends and family that we recommended or liked things we hadn’t even seen! 2

We didn’t like that Facebook reads our private messages, and the content of the links that they contain.

We didn’t like that Facebook collects information about our devices and location. 3
(e.g. device identifier, specific geographical location, mobile number, IP address)


We didn’t like that Facebook stalks us all over the web.
Did you know that anywhere on the web you see a Facebook ‘like’ button or Facebook login option, Facebook has tracked you there and is collecting information about you, even if you don’t use either of them? 4
(Thankfully, you can install a free blocker to stop this from happening. Bonus: it will also stop those annoying Google ads. Yes, I did look at compression stockings yesterday. Does that mean I now want to see an ad for compression stockings on every page of the internet I visit? No.)

We didn’t like what Facebook does with all the information they collect about us.
Facebook collects your name, profile picture, current city, gender, networks, complete list of friends, and complete list of connections (list of pages that you are a “fan” of, hometown, education, work, activities, Facebook likes and interests), and your likes and recommendations from non-Facebook pages around the web, as well as information they’ve inferred about you, and then they disclose it to their business partners, and sell it to advertisers.5

*      *      *

I don’t have anything to hide from Facebook, or the businesses they are selling my information to; I haven’t been taking pretend ‘sick’ days from work, or visiting illicit websites. Nor am I involved in illegal activities like pirating music or taking banned drugs. I’m not secretly pregnant and worried about it being exposed to my friends and family.

But that doesn’t mean I’m happy for my private messages to be read by just anyone. Or that I’m okay with my personal details being passed around like cake at a birthday party.


So, in 2015, Mr Happy and I deleted our Facebook profiles.6
This post is long enough already, so I won’t go into details about how that’s worked out for us. But, the short version is, sometimes it’s annoying, but mostly it’s awesome!

For more information about Facebook, I recommend reading Get Your Loved Ones Off Facebook, by Salim Virani. It’s the post that got me started.

And yes, I know how this all sounds. I’m not a conspiracy theorist. I’m just someone who sat down one day and read all those terms and conditions we usually never bother to look at. Part of me wishes I hadn’t: I enjoyed using Facebook when I was blissfully ignorant of what was happening behind the scenes. But once I realised what all that fineprint was saying? No thank you.

There was life before Facebook.
Life can continue without it.
(Yes, really!)

xx S.

1 Facebook Terms of Service – If we make changes to policies, guidelines or other terms referenced in or incorporated by this Statement, we may provide notice on the Site Governance Page. Your continued use of the Facebook Services, following notice of the changes to our terms, policies or guidelines, constitutes your acceptance of our amended terms, policies or guidelines. 

2 Facebook Terms of Service – Our goal is to deliver advertising and other commercial or sponsored content that is valuable to our users and advertisers. In order to help us do that, you agree to...give us permission to use your name, profile picture, content, and information in connection with commercial, sponsored, or related content

3 Facebook Data Policy – We collect information from or about the computers, phones, or other devices where you install or access our Services…here are some examples of the device information we collect: Operating system, hardware version, device settings, file and software names and types, battery and signal strength, and device identifier, device locations, including specific geographic locations, such as through GPS, Bluetooth, or WiFi signals, connection information such as the name of your mobile operator or ISP, browser type, language and time zone, mobile phone number and IP address.

4 Facebook Data Policy – We receive information about you and your activities on and off Facebook from third-party partners. We collect information when you visit or use third-party websites and apps that use our Services (like when they offer our Like button or Facebook Log In or use our measurement and advertising services). This includes information about the websites and apps you visit, your use of our Services on those websites and apps, as well as information the developer or publisher of the app or website provides to you or us.

5 Facebook Terms of Service – Our goal is to deliver advertising and other commercial or sponsored content…In order to help us do that, you agree to…permit a business or other entity to pay us to display your name and/or profile picture with your content or information, without any compensation to you. (emphasis mine)

I’m part of an amazing Australian dysautonomia group on Facebook, where we all share information about tests and treatments, as well as support each other in our chronic illness struggles. Since I had no other way to access this group, I created another Facebook profile, after Mr Happy and I deleted our accounts. The new profile still uses my real identity (since that’s a Facebook requirement), but I have no ‘Facebook friends’ and use my page only to interact with the illness group, and a few craft groups. A free blocker stops Facebook from tracking me all over the internet. That’s the best that I can do to be “off Facebook”, but still have access to the illness support group.

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