When Your Social Media Algorithm Becomes Part of Your Illness

There is a strange thing that can happen when you, or someone you love, becomes seriously ill.

Your social media feed often changes.

Maybe you search for a mastectomy bra. Or you look up what to expect after surgery. Maybe you search for home hospice, a mobility aid, a medication side effect, or what to bring to a chemotherapy appointment.

And yikes, now your entire feed seems to know.

The ads start appearing left and right.

Then come the influencers. The people sharing their cancer journeys. The people talking about the treatment that worked for them. The people who decided against treatment. The people who swear by a particular diet, supplement, protocol, mindset, or approach to their illness.

Do chemo.

Don't do chemo.

Have the surgery.

Avoid the surgery.

Eat this.

Never eat that.

Try this supplement.

Don't take that medication.

Some of these people may be sharing genuinely helpful information. Some may simply be sharing their own experience and what worked for them. Some may be selling something.

But even when the information is well-intentioned, it can become overwhelming very quickly.

And that's happening at a time when you may already be trying to process a diagnosis, understand your options, attend appointments, remember what your healthcare team has told you, and figure out what happens next.

You probably do not need another person on the internet telling you what to do.

Your feed doesn't know what you need

One of the difficult things about social media algorithms is that they don't understand context.

They don't know that you searched "hospice" because your dad has been referred to palliative care.

They don't know that you searched for a post-surgical garment because you're frightened about an upcoming operation.

They don't know that you watched a video about someone's cancer experience because you were trying to understand what another person went through, not because you want to spend the next three hours watching cancer content.

The algorithm simply sees engagement.

You searched for something.

You watched something.

You paused on something.

You clicked.

And it learns.

That can create a feedback loop where something that was initially a small part of your life begins to occupy a huge amount of your digital life.

You don't have to leave social media altogether

For some people, stepping away from social media completely is exactly what they need. In this case delete the aps from your phone and take the break you need. Heck yes.

But I've also heard from people who don't actually want to leave.

Their social media might be one of the ways they stay connected to friends and family near and far. It might give them something to look at while sitting in a waiting room. It might provide moments of humour, normalcy, distraction or connection during a difficult day.

The problem isn't necessarily social media itself.

Sometimes it's what social media has started showing you.

And there are things you can do to change that.

Start telling the algorithm what you don't want

Most platforms have some version of "Not interested," "Show me less," "Don't recommend," or similar feedback.

Use it. Use all of it.

You don't have to watch something all the way through because it appeared in your feed. You don't have to engage with it. You don't have to explain why you don't want to see it.

If something makes you feel anxious, overwhelmed or simply exhausted, tell the platform you are not interested.

On TikTok, for example, you can mark individual posts as "Not interested," refresh your For You feed, filter specific keywords and adjust topic preferences. TikTok says these tools are designed to help reshape the content recommended to you.

YouTube similarly allows you to select "Not interested" or "Don't recommend channel," and you can manage or delete your watch and search history if you don't want those past searches continuing to influence recommendations.

The exact settings change over time and vary between platforms, but the principle is the same:

You are allowed to curate your feed.

Be careful what you interact with

This one is surprisingly difficult.

You see something frightening. Or with a catchy image or headline.

You stop to read it.

Then you read the comments.

Then you watch another video.

Then another.

And before you know it, you've spent 45 minutes consuming information that you never intended to look for.

If you don't want more of something, try not to reward it with more attention.

You don't need to argue with the person.

You don't need to comment.

You don't need to finish the video.

You can simply keep scrolling.

And when possible, deliberately interact with the things you do want to see.

Send your friend a message.

Like the photo of someone's dog or cat.

Watch something funny.

Look at travel photos.

Follow an account that has absolutely nothing to do with illness.

Your life is still bigger than the diagnosis.

Your feed can be, too.

Search for what you want somewhere else

If you need medical information, consider getting it from places designed to provide medical information rather than relying on your social media feed to educate you.

Your healthcare team can help you understand your particular situation.

Reliable health organizations and medical websites can help you find general information.

And if you come across something online that makes you wonder, bring it to your healthcare team rather than letting the internet become your healthcare team.

There is a big difference between using the internet to prepare questions for your doctor and allowing an algorithm to determine what you should be afraid of or do next.

Create a little separation between researching and scrolling

If you're going through treatment, it can be helpful to make a distinction between intentionally looking for information and being exposed to information.

You might decide:

"I'll spend 20 minutes researching this question, and then I'm done."

Or:

"If I have a medical question, I'll write it down and bring it to my next appointment rather than immediately searching for it on Instagram."

Or:

"I'll use my phone to stay connected with friends, but I'll avoid scrolling when I'm already feeling overwhelmed."

There is something very different about choosing to seek information and having information continuously delivered to you.

Many of my clients keep a notepad handy so they can write these questions down in one place to bring to their next doctors appointment.

And it's okay to take a break

You don't have to prove that you're coping well by staying online.

And you don't have to delete everything forever, either.

You can take the app off your phone for a week.

You can mute certain accounts. Mute certain stories.

You can turn off notifications.

You can download a few shows before an appointment.

You can bring a book.

You can listen to music or a podcast.

You can sit quietly.

You can look through photos of your family.

You can do something that reminds you that there is a whole world outside of this diagnosis.

And if you eventually want to come back to social media, you can.

And you don't have to decide that today.

You are allowed to protect your attention

When you're facing illness, grief, caregiving or your own mortality, there can be a tremendous amount of information coming at you from every direction.

Appointments.

Test results.

Medications.

Decisions.

Opinions.

Questions from other people.

And now, potentially, an algorithm that has decided your entire identity is this one thing.

It isn't.

You are still a whole person.

You are still someone who has favourite music, people you love, places you want to go, things that make you laugh, books you want to read, meals you enjoy, stories you want to hear and ordinary moments you want to experience.

You don't owe the internet your attention simply because it has learned what you're going through.

Curate your feed. Protect your attention. And give yourself permission to look away.