Have you ever noticed how some people are more open about their health struggles than others? Have you assumed it’s because they want attention? If so, you might be wrong. And even if you’re right, what’s so wrong with needing some attention in the darkest moments of our lives?
I recently looked up why people post about their health struggles, and found an article from 2016 in Times Union titled “Stop posting about your ailments, hospital visits to social media“ by Kristi Gustafson Barlette.
The author writes: “These posts and photos don’t generate conversation. They don’t entertain or amuse or even educate or inform others. No, they’re simply a sign of desperation, a need for attention, a craving for people to comment with ‘OMG, get better!!!’ and ‘what happened?’ or ‘thinking of you!!!!'”
She later goes on to tell us how she’s had several, mostly small, medical procedures over the years and “never posted about them.”
She also wrote: “None of my family or friends have ever shared an image, or status update, related to their ailments, either. Why? Because we have each other. We have real friends — AKA those ‘IRL friends.’ We have family and we have colleagues who care. People we can reach out to in a group text or email, if need be, but we don’t need to post images or tales of medical woes online in a sad and desperate plea to get attention and to feel ‘loved.'”
First, I would like to congratulate this woman on her privilege. She can work a full-time job, she has family and friends around her to support her IRL (in real life), and she has had minor health bumps but nothing major. The thing is, not everyone is so lucky. Not everyone has a support network around them.
By telling others to stop posting about their ailments, she is showing her lack of compassion and empathy for those struggling or who have gone through a traumatic experience. Why does her opinion even matter? There were no warnings in her article telling us the dangers of posting online — it was just her arrogant opinion.
Painful Lessons of Being Open About My Health
Posting online about my chronic illness journey has shown me some of the people who are uncomfortable when I speak about that topic.
From the time I fell ill, I have lost touch with many friends and acquaintances — some people are just uncomfortable or don’t know what to say or do around someone with a disability or illness. They should see how uncomfortable it is to live with our ailments that make them feel uncomfortable being around us. They assume we are just “sadfishing,” or posting sensitive, emotional personal material online to gain sympathy or attention from the online community.
I can now see who reads, comments, or likes my posts on my health and those who only like my cute selfies, media announcements, or music talk. Some just don’t like hearing about it and assume I am posting for attention — well, maybe a little, but that isn’t the only reason I post on the internet about my health struggles.
Why Sharing My Health Journey Helps Me and Others
It’s okay to seek attention and validation in our darkest of times. Don’t like it? Simply keep scrolling and move along with your day. That said, there are quite a few more reasons that I share my health journey on social media.
1. To raise awareness for chronic illness
Raising awareness about a debilitating disease that is best treated early is important to get the early symptoms out there. This is essential to educate healthy folks about what could happen to them tomorrow, or be happening to them now, if they ignore chronic pain that isn’t going away.
I want to showcase what it’s like to live with chronic illness to others because this is not easy. Those on disability are forced to get by on below-poverty pay while managing expensive chronic health conditions. We are not sitting around being lazy all day, we are fighting an invisible battle inside.
2. To show the reality of living with an invisible illness
So many people assume that because someone looks healthy they can’t be living with a chronic disease — but that is not the truth at all. In fact, many people who spend time on themselves are doing it to relieve symptoms of a chronic illness.
3. To connect with others who share the same experiences and find community
Advice from those who have gone through it can be as useful as a visit to the doctor because those who live with it really know how to live with it.
Connecting with my community has helped others get an earlier diagnosis, taught them about treatments, comorbidities, side effects, and how my disease also impacts my son’s life.
4. It takes less spoons to make one post than carry on multiple conversations
Anyone living with chronic fatigue can tell you that socializing can be exhausting. At times I find carrying on multiple conversations difficult and overwhelming. Making a social media post about it can reduce spoons and invite those who are free to talk or show support to me to do so.
5. To feel less lonely and isolated while showing others they are not alone either
Over the years as a patient influencer on social media I have received a lot of messages from people who have read my words or follow me on social media saying they feel less alone because of how I speak up about life with chronic illness. I can remember when I felt so alone, and helping others not feel that intense loneliness is a definite reason to talk about my health. It’s a way for me to support others, help others feel seen and heard.
6. It’s a heck of a lot cheaper than therapy
Writing it out, talking about it, discussing it with others is all a very cathartic experience. Even if I just write out the status, and then delete it. That ability to just vocalize my issues helps me get through them. To have an outlet helps improve my mental health, and well, it’s significantly cheaper than therapy.
Talking about my health struggles to others helps me accept them, recognize them, and create an action plan toward self-management.
7. To explain why I am MIA and to set boundaries
There are times I post about my health struggles so others know I’m not around because I am dealing with my chronic illness. It might be my way of saying “Hey, don’t forget about me. I haven’t forgotten about you; I am just dealing with something at the moment.” I know for sure when I am flaring I need my space and I can feel easily overwhelmed with too much communication at that time, or I may be falling behind on tasks with upcoming deadlines.
8. To keep myself motivated and accountable for my actions
Living with a chronic illness comes with hours and hours of self-management, which can become a daunting chore. When I post about my triumphs or struggles, it helps keep me motivated while taking charge of what I need to do to care for my chronic illness.
9. To ask for help when I don’t know who to turn to
Sometimes coming out and saying you need help is too difficult to do, or you may not realize you need help in the first place. Friends and family have helped me out after I started to become more open about my struggles without having to ask them, even in times when I didn’t realize I needed help in the first place.
10. To keep a record of my health journey
Going back through my timeline has been useful when I need to remember certain dates of starting medications or the date of an appointment. Posting on social media has been one of my ways to keep organized with all of my health concerns. It helps me remember details easier.
11. To promote research and raise funds for a better tomorrow
Another reason I post on social media about my health struggles is to promote research and raise funds for more research, innovations, and hopefully one day a cure. Participating in research has benefited my health and knowledge of my disease, other patients need to know about this information too.
12. To put a stop to ableism and bullying
By being an advocate for chronic illness, I have become passionate about speaking up against ableism, the form of discrimination many of us living with a disability or chronic illness experience regularly. Ableism is out there and runs rampant; we need allies to stick up for us throughout the discrimination we receive.
13. Because I am only human after all
So yeah, validation, love, support, and attention makes me feel a little bit better through the shit storm that is chronic illness. Research shows that those who are well supported have better outcomes with their chronic illness, so of course I want that.
If you have a friend or loved one who is posting on social media about their health, my advice is to show them some love and support. It can do wonders for them because you may be in their position one day.
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