Pros and Cons of Sharing About Chronic Illness Online
When Julia Louis-Dreyfus revealed that she had been diagnosed with breast cancer on Twitter in 2017, I remembered how I struggled with how much I should share with my friends online about my own breast cancer journey. An article in USA Today reflected the constant question: how much info, if any, on chronic illness diagnosis and treatment should be shared in emails or on social media?
Like many people, I have gathered friends on social media who are now all over the world. Some are in far-flung (to me anyway) places like Morocco, BC, Alberta, Saskatchewan, North Carolina, and Florida. When I was diagnosed with breast cancer and possible bone cancer in 2011, I had to weigh the pros and cons of sharing my diagnosis and treatment journey with family, friends, and others in my life.
Pros of Sharing Info on Chronic Illness Online
Pro: Sharing builds a support network
I never realized how many people had had or were undergoing cancer treatment when I started to tell the people around me about my diagnosis. Some people came forward to give me rides to medical appointments and sat with me as I went through chemotherapy and drug therapy. They provided a listening ear when I needed it.
I had friends who had already been through the cancer journey, but I found that everyone’s experience is different. Someone would breeze through radiation with few side effects, while my sensitive, pale skin fried. I would be fine on a certain drug therapy overall, while another person would struggle with heart problems. On the whole, treatment is a scary journey into the unknown. Having people in my life who have already been through treatment is comforting, even if their experience is somewhat different from my own.
Sometimes, patients develop online relationships with people who are going through similar circumstances or have had past experience with the same type of chronic illness. Some medical professionals are using social media to network with experts in their field of expertise on diagnosis and treatment of chronic conditions.
Pro: Provides greater access to resources
Supporters are a good source of information and knowledge of resources on chronic illness. Sometimes people can connect us to groups and organizations that were helpful.
Pro: Can decrease stigma
I have found that my journey can educate others about chronic illness and their treatments. Illnesses such as cancer may be less scary and more real to others when they know some of what I are going through.
Cons to Sharing Online
Con: People may be hurt if they found out about a diagnosis on social media
Some people may be offended that they found out on social media that someone they care about was diagnosed with a chronic illness. They would have expected me to inform them in person or through a phone call. Friends may think that me posting my diagnosis on social media shows that I do not consider them not close enough to be informed personally. The American Cancer Society recommends that patients compile a list of people who they want to inform before they share our diagnosis with others.
On the other hand, it is likely people who are close to patients will find out through the rumor mill whether patients post or not. Patients may not initially share a diagnosis, but share snippets about their treatment because their circle of friends know anyways.
Con: People expect constant updates
One of the problems with sharing a diagnosis is being committed to sharing regular updates. I was expected to answer a lot of questions about my condition when I shared snippets on social media. People were checking in and wanting to know the latest. This can be overwhelming. After sitting for an hour and a half or more for chemotherapy or a long day of tests and doctors’ appointments, the last thing I felt like doing was answering questions, dealing with fixers, and correcting misconceptions.
Con: Sharing may stir up stigma
Some people are uncomfortable around people who have been diagnosed with chronic illnesses because they believe in myths and misconceptions. For example, some people look on a diagnosis of cancer as a death sentence or assume that the patient is incapable of continuing to perform well at work.
Con: May bring out the fixers
Sometimes, a diagnosis of a chronic illness brings out a compulsion in people to try to fix the situation. When I shared my condition with some people, I got stories about how a green goop shake or herbal treatment “cured” someone’s cancer. Invasive questions may be asked such as:
“What is your diet like?”
“Do you exercise?”
“Have you tried… (whatever herbal remedy they are promoting)?
Sometimes fixers are close to patients and unavoidable, but patients do have a choice as to how much they expose ourselves to fixers on social media. When patients share online, there is always a danger that fixers will come out of the woodwork. These people are often well-meaning but can be annoying.
Con: Patients may be subjected to inappropriate comments or questions
There will be people who will tell patients to cheer up and deluge them with “things will be OK” platitudes. They are uncomfortable and feel obliged to say something – anything, no matter how awkward or inappropriate.
Con: Once the information is posted online, it is out of the patient's control
Patients cannot control how their posts are shared on social media. That is one reason why patients should consider who they want to know about their diagnosis. They need to decide if co-workers and superiors need to know the patients' day to day struggles.
Con: Sharing may cause repercussions
Some countries such as the U.S. have laws in place to protect people with serious illnesses from discrimination or illegal firing in the workplace, but in the real world, people have been fired for their diagnosis on trumped-up charges. Sharing health data online may also make us vulnerable to hacks.
Questions to Ask Before Posting Online
- Are you sure of your diagnosis? Misdiagnoses happen all the time.
- Have you thought through the consequences of sharing or are you acting emotionally on the spur of the moment?
- How will people react to the news, especially people who are close to you and those in your workplace? Will there be a stigma backlash?
- Are you prepared to answer any potentially nosey or awkward questions or tell people that you do not want to talk about your illnesses?
- Are you able to set boundaries such as saying no to activities, not answering certain queries, or keeping negative or nosy people at bay?
- Are you willing to provide updates on a regular basis?
- Can you deal with people who are well-meaning but are ignorant and say the wrong thing?
Dealing with the diagnosis of a chronic illness and going through treatment is difficult. I had to process my condition and deal with the nervousness, stress, fear, and negative physical effects of treatment. I needed to decide if sharing my condition will provide the support and acceptance I needed or created more problems for me.
If a patient does decide to share information about a diagnosis online, it is wise for them to take baby steps and limit what is shared. I chose this course when I was going through my treatments. Limiting sharing will help a patient gauge how comfortable they are in posting their journey with chronic illness, and assess whether the reactions online are positive and supportive or detrimental.
Julia Louis-Dreyfus' cancer disclosure shouldn't be a model for everyone. Consider this first, USA Today, Steven Petrow
Telling Others About Your Cancer, American Cancer Society
'Coming out' with cancer, Fred Hutchinson Cancer Research Center, Diane Mapes