When You Rely Heavily on Facebook Due to Chronic Illness

Most advice you get, especially that motivational, “take control of your life and make your dreams come true” type stuff is geared toward healthy people. If you haven’t always been sick, you sometimes forget you’re sick, get excited about this kind of stuff and feel you can do it, too. Then you remember that’s no longer your reality. That’s how I feel about social media.

From a “healthy” person’s point of view, if you can waste time online, you must have energy to be productive, so you can’t be that sick. I’m sure I’d feel the same, if I saw someone posting all the time who “claimed” to be too sick to work even an hour a day… if that weren’t my reality! I know for a fact that you can indeed be too sick to work even an hour a day and still be online all the time, because it’s the prison I’ve been living in. It’s something that seems to baffle anyone who doesn’t have first or second-hand experience with chronic illness and they definitely wouldn’t see it as a prison, but I can assure you that it is.

The difference between being on social media and being able to work is that social media is a mindless way to kill the time — time I’m forced to spend in bed, because I can only be productive for 30 minutes. I don’t sleep 23 and a half hours a day, so how else am I supposed to occupy the rest of the time that I’m awake, but unable to do anything? Mindless scrolling, it is! Being stuck in bed and totally isolated all day, every day is bad enough without at least having something to distract you from the monotony.

So, I’d love to take the inspirational advice to “unplug” and “go out and live,” but unplugging means so much more for me. I don’t get to socialize at or after work; what I usually get is a brief interaction with the doctor, pharmacist or physical therapist. Other than that, my connection to the world comes through the internet. There’s still this part of me that wants to go offline, because you do get sucked in and waste time goofing off even when you could be productive, and I’d rather channel that energy into something that’ll bring me forward in life, but that would mean an immense amount of quiet and restlessness the majority of the time, when I want to be out living, but am unable to.

Years ago, I managed to withdraw a bit by using another Facebook account with no friends, just to access my chronic illness support groups when I needed advice. That way I escaped all the overstimulation, but still had access to my lifeline. But now I’m the one giving advice and have put so much information out there, that I want people to have access to, that I wouldn’t want to deactivate my main account. Maybe I could leave it online and dormant, but since I don’t receive any government aid, I’m also dependent on donations to get by. So I need to be online to let those supporting me know what’s going on, otherwise I have no chance of getting enough to cover the cost of food and accommodation.

Now, something strange seems to be happening. Most people think this is really weird and sound like they don’t believe it, but it’s happening to more people than you realize. People are having their Facebook accounts repeatedly taken offline for several days while under review, then the account reappears, but is on probation for a week. While on probation, you can comment on friends’ posts and make posts in groups you admin, but you can’t post in groups you don’t admin. You can also post on your own page, but those posts will get zero visibility, which is why it’s hard to let people know this is happening. Once your probation period is up, you try to post normally, but are immediately taken offline for another review and then put on another week-long probation.

This happened to me so many weeks in a row and I appealed it so many times, but I was never given any explanation nor was anything ever done about it. I didn’t post anything forbidden and it just kept happening. Now they’re saying my account will be permanently deactivated unless I submit ID to begin the appeal process. The problem is, you’re redirected to the Help Center to submit ID, which automatically logs you out, and you can’t submit ID unless logged in. So there’s effectively no way to appeal.

I keep saying I want to get off Facebook and use the little energy I have more productively, so I guess I should be thanking them for helping me out, but I do still need access to my account in order to connect with the world, get advice from others dealing with the same health problems, allow others to see past posts sharing useful information about effective treatment options they might not be aware of and to raise money to cover the cost of basic necessities. And who knows how many others are affected by this and are totally new to the world of chronic illness, and have so many questions they can’t ask or aren’t in a good place mentally and need that support!

Why is this happening? Why has it been going on for so long? What can be done about it? I’m at a loss here. I created a profile on Minds, a newer site meant to be a Facebook alternative, but there aren’t enough users there yet and I doubt everyone would be willing to migrate there, especially if they have no idea this is happening and aren’t affected by it personally. So what now?

What have your experiences been with social media?

Update: Since writing this, I was able to find links to submit ID to Facebook without being logged in, but never received a response. It’s now been 14 days since I first submitted the appeal.

Follow this journey on the author’s blog.