Sharing Your Illness on Social Media: Pros and Cons

Sharing Your Illness on Social Media: Support or Loss of Privacy?

Does sharing your illness on social media bring support or become a burden? Questions to ask first, coping with comments and differences by age.

A few days after the diagnosis, you pick up your phone and start writing a post. You write a few sentences, delete them, write them again. As you wonder, "Should I just write it once instead of telling everyone individually?", other questions go round in your mind: "What if people at work see it? How will my mother feel if she reads it? What if everyone starts looking at me with pity?" Sharing your illness on social media is a new decision that many patients and their relatives face today. For some, sharing becomes a great source of support; for others, it means privacy that has slipped out of their control and an exhausting downpour of attention. In this article I look at the possible benefits and risks of sharing, the questions you can ask yourself before deciding, and how you can cope with the reactions that come after you post.

People who share their illness have very different reasons, and all of them are understandable.

To be spared the burden of telling the story over and over. Giving the same news to everyone who calls and every acquaintance who asks is exhausting. A single post can lighten this load.
To feel support and closeness. Messages from distant friends, old school friends and relatives living abroad can help a person feel they are not alone.
To find meaning. Some people regulate their own feelings by writing about their experience. Writing can be a way of making sense of what is happening.
To raise awareness. Some want to draw attention to the importance of early diagnosis, organ donation or blood donation.
To connect with people who have been through something similar. Messages from people living with the same illness can create a feeling that "there's someone who understands me".

None of these reasons should be seen as "seeking attention" or "playing for sympathy". Someone who shares their illness often simply wants to be seen, to be heard and not to be left on their own. Likewise, someone who chooses not to share is not cold or closed off; they have simply chosen a different way of coping.

Losing control of your privacy

Once shared, information goes out into a space where you cannot fully control who sees it. Screenshots can be taken and it can be reshared on other people's pages. You cannot know who will see information you share comfortably today years from now, in a job interview or a new relationship.

Unwanted advice and offers of cures

Under posts about illness, comments such as "Try this herb", "Someone I know went to this doctor" or "Don't have that treatment, it's harmful" are common. Even when well meant, these comments can cause confusion, anxiety and pressure to make decisions. It is important to remember that medical decisions should be made only together with the doctor treating you.

Pity and labelling

After a post, some people may start to see you only through your illness. Being asked "How are you, how's the treatment going?" at every encounter can make you feel as though you are nothing more than your illness. Even on a day when you feel well, being met with sorrowful looks can be tiring.

The pressure to "look well"

Once a "strong patient" image has formed on social media, it can become harder to share the bad days. The person may try always to come across as hopeful and smiling so as not to disappoint their followers. This pressure leads to real feelings being suppressed. I have discussed how social media in general can become an arena for comparison in the article on comparison on social media.

Comparison and fear

Following the posts of people with a similar illness can sometimes give hope, but it can also create intense fear. Reading about someone else's condition getting worse can lead a person to build catastrophic scenarios about their own future. Yet every illness journey is different, and you can only get information about your own situation from your doctor.

Fundraising campaigns and the burden of being visible

In Turkey, fundraising campaigns launched on social media for expensive treatments or treatment abroad sometimes attract a great deal of attention. These campaigns can be a real source of hope for many families. But making an illness this visible brings its own burden: pressure to post constant updates, private messages from strangers, suspicious comments such as "Where is the money going?", and even photos of an ill child being used without permission. If you are considering such a campaign, it is important to get information from the relevant institutions about legal permissions and safe ways of collecting donations, not to place responsibility for the campaign on one person's shoulders, and to set limits from the outset that protect the patient's privacy. It is also worth remembering that the images of the child or adult patient will remain online after the campaign ends.

A post can lead to information you have not yet told anyone at work being heard in a way you did not want. When, how and how much to tell your employer is a separate decision; I have discussed it in the article should I tell my workplace about my illness.

Sharing your illness on social media is neither entirely right nor entirely wrong. What matters is that the decision fits your needs and values. The following questions may help you think it through:

What do I want to get out of this post? Support, informing people, relief?
Who do I want to know this? Everyone, or only my close circle?
Would it bother me for this post to still be online a year from now?
Am I in a position to handle the comments that will come, especially advice and expressions of pity?
Does this post affect the privacy of someone else in my family, such as my children or my spouse?
Do I need to rush to share, or can I wait a while?

Sometimes the healthiest decision is to share nothing during the shock of the first days and wait for your feelings to settle a little. If you do choose to share, you decide how much detail to give. Saying "I'll be having treatment for a while; thank you for your understanding if I'm slow to reply to messages", without naming the diagnosis, is also a way of sharing.

The story of your illness belongs to you; so does the right to decide who knows, when, and how much.

Middle-Ground Options

There are many options between a public post and complete silence:

Close-friends lists or private groups. Posts that only people you choose can see let you get support while protecting your privacy.
Choosing a "messenger". A family member or close friend can pass on updates to particular people on your behalf.
Short updates in messaging groups. Giving the extended family or a group of friends regular but brief updates reduces individual questions.
Turning off comments. Posting but turning off comments can prevent unwanted advice.
Keeping a personal journal. If writing does you good, you can do it without sharing. Later, if you wish, you can share part of it.

If you are the parent of an ill child

Many parents share their child's illness journey to ask for prayers and support. But a child's hospital photos, treatment details and hard moments may be information they would not want shared when they grow up. Asking yourself, "How would my child feel seeing this post at fifteen?" can be a useful guide. Even asking school-age children, "Can I share this photo with our friends?" teaches them that their bodies and their stories belong to them.

If you are a young person who is ill

For young people, social media is an important part of friendships. Sharing their illness brings some young people support, while in others it creates a fear of being mocked or left out. You decide what to share; you can also ask your family not to post anything without your consent. If you come across negative comments or cyberbullying, be sure to tell an adult you trust.

If you are an adult patient

For adults, work, children and spouse play an important part in the decision to share. Making the decision together, bearing in mind that your spouse and children will also be affected by the post, can prevent tension within the family. For example, your school-age child hearing about their mother's or father's illness from the parents of their classmates can catch them unprepared. That is why it is important not to post anything before you have told your children about the situation yourself. If you are connected on social media with a wide circle such as colleagues, clients or students, separating your personal and professional accounts may also help. Letting people know that you will be taking a break during treatment can bring understanding without giving any details.

If an older relative is ill

Older patients often do not use social media, but their families post on their behalf. Before sharing a photo of an elderly mother or father in a hospital bed with a note saying "We're waiting for your prayers", getting their consent where possible protects their dignity. If they are not in a position to make this decision themselves, taking into account their previous attitudes and values is a respectful approach.

How Do You Cope With Reactions After Posting?

After a post there may be a flood of messages and calls. This attention can feel good, and it can also be exhausting. It is important to remember that you do not have to reply.

Examples of short replies you could give to comments (fictional):

If advice comes in: "Thank you for your concern; I make my treatment decisions together with my doctor."
If an expression of pity comes in: "Thank you; these are hard days, but we're moving forward with a good team."
If someone asks for details: "I'd rather not go into detail for now; thank you for understanding."

Expressions you may want to avoid when commenting on an ill friend's or relative's post:

"My neighbour died of the same illness." (It creates fear rather than giving support.)
"I recommend this doctor to you, he's very good." (It can create doubt about the treatment process.)
"Always stay positive, your thoughts will heal you." (On days when they feel bad, it can make the person feel guilty.)

Expressions you could write instead:

"I'm thinking of you. I'm here if you need anything."
"Thank you for sharing. You don't have to reply."
"I could drop off a meal at your home on hospital days; would you tell me a day that suits you?"

When Should You Seek Professional Support?

After sharing their illness on social media, some people may experience intense anxiety, regret or loneliness. In the following situations it may help to get support from a mental health professional:

Intense anxiety, sleeplessness or anger because of the comments received after a post
Following the posts of people with a similar illness for hours and feeling bad afterwards
Trying to look "strong" on social media while actually feeling deeply low
Avoiding people or withdrawing after a post

If you are experiencing deep hopelessness or thoughts of ending your life during your illness, do not carry this alone; in an emergency, call 112 (emergency services).

How Are Illness and Privacy Addressed in Therapy?

In therapy you find a space where you can talk without rushing about the decision of who to share your illness with and how. As a person's values, needs and boundaries become clearer, the decision about sharing can be made more comfortably.

Within cognitive behavioural therapy, thoughts such as "If I don't share, people will drift away from me" or "If I share, everyone will pity me" can be examined. The effect of social media use on your mood can be reviewed together, and concrete steps can be planned, such as setting limits on following similar illness stories. I have discussed how searching for information about your own illness online can affect anxiety in the article on researching an illness online.

Individual therapy can help with managing the emotional burden of illness and your relationships with the people around you. When leaving home is difficult because of treatment, sessions can also take place online.

Frequently Asked Questions

I shared my illness but regret it. What can I do?

You can delete the post or restrict who can see it. Even if screenshots have been taken, the right to decide what you share from now on is still yours. It is also possible to meet your regret without judging yourself and, if needed, to tell those close to you, "I'd rather not talk about this any more."

Talking to your family at a calm moment, without blame, can be effective: "I understand that you want support, but I want to be the one to decide what is shared about my illness." Acknowledging their worry and good intentions makes your boundary easier to hear.

Information about an illness is personal, and not sharing it is not hiding but protecting your privacy. Telling the people close to you who need to know directly may be enough.

Since I shared my illness, everyone keeps asking. How can I set a boundary?

A short, polite reply is enough: "Thank you for asking; I'll share if there's any news." Leaving regular updates to a family member, or sharing one short update at set intervals, can reduce the individual questions.

#social media
#privacy
#patient psychology
#family caregiver

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Eda Erkan Alapala

Klinik Psikolog. İstanbul Kent Üniversitesi Klinik Psikoloji Tezli Yüksek Lisans mezunu; bilişsel davranışçı terapi, çocuk merkezli oyun terapisi ve çocuk-ergen psikoterapisi alanlarında eğitimlerini tamamlamıştır.

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