Should people post about their health on Facebook? How about the health of their loved ones?
Today’s NHBPM topic poses an interesting question in light of fast paced changing perceptions of social media and privacy. It’s also an interesting topic to discuss in a month focused on the blogs of people with chronic illnesses and during which I am specifically trying to raise awareness of my own condition, Complex Regional Pain Syndrome.
Facebook has fast become a centre of social information in modern society. Most people who use this service have experienced that this comes with both positive and negative aspects. You might have also noticed that what exactly is considered positive or negative behaviour on Facebook is different depending on who you instant message about it.
Over-sharing is not a fact, it’s an opinion. Kind of like this blog post.
I choose to post about my health on Facebook and various other online communities. Earlier this month, I explained why I would choose to write a blog about my health. The difference between updates on my blog and updates on Facebook is the intimacy aspect.
Writing and sharing a blog is a little bit like standing up in front of a crowd to deliver a speech. You don’t know exactly who is watching, who of those is listening, who of those is relating or understanding or not really paying attention. Unless they happen to come up to you afterward and let you know what they thought.
Sharing a status update on Facebook is more like whispering to a group of your friends in the back of the auditorium. You’re talking specifically to people who know you, who (hopefully) like you. A few of them will hear what you say, some will respond, some will offer their own stories in relation to what you have shared. You like them too and you probably care what they think about you.
So, how much should you tell them?
The exact amount that will help you to feel connected and understood. Doesn’t sound too hard, right?
Living with chronic pain is a tough gig. It permeates every aspect of a person’s life, the life that they are sharing with their friends and family on Facebook.
Some people believe that health is one of those things that you shouldn’t talk about, like politics or religion.
There are people who believe that bodies are always a private thing, they don’t want to hear about your sex life or your hospital visits and they don’t really see the difference between those topics.
These are probably not the sorts of people that are going to be an asset to the online world of somebody living with chronic illness. They are, however, the sorts of people whose opinions might serve as gags on the mouths of their sick friends who don’t want to offend, who don’t feel comfortable challenging the comfort levels of the bodies are private types.
Many aspects of my health are not private at all. I disclose them to my friends, my family and the public and I do this without shame. I do this because I am not my illness, I am not CRPS, however I am most certainly incredibly influenced by it and its part in my life. I have to deal with it every day, I cannot choose to hide it from my newsfeed.
Complaining is rarely beneficial to me, however venting can be a huge help. Sometimes, it is all just too much and I’ll send an exasperated tweet or status out to the universe comprised of my online connections. Often, these messages reach people who understand, who reach out because they can relate. The truth is that we are never alone, despite chronic pain often resulting in physical isolation.
I’ve been through periods when I didn’t want to send out any negative updates. I was trying not to focus on those feelings and I didn’t want to validate my emotional down turns by broadcasting them. The truth is that nobody’s life is 100% positive all the time and by only sharing the times I could muster positivity, my profile had stopped to feel like a real representation of myself.
I am the down days too and I can appreciate the value that adds, good days couldn’t happen without them. Good only exists in relation to bad. You can have a basket full of good eggs, but only because there have been bad eggs. If not, all you’d have in your basket would be nondescript eggs.
And so I share it all, all that I can stand to.
I do this in the pursuit of awareness. This word means so much more to those that find themselves living a kind of life they’d never even heard of before, to those that feel sick and invisible.
But, how much should my friends and family share about my health?
Sharing other people’s stories should always be a thoroughly considered undertaking. Everybody has different ideas about what they’d like told and what they’d like to keep private.
This sounds complicated and like maybe you should just shut up, but that’s not the case at all. If you aren’t sure about whether or not your sick friend minds you talking about them on social media, ask! Even if the answer is no, the fact that you bothered to care is going to mean something to them. Trust me.
For bloggers who live with chronic illness, it can be a little bit easier to garner what they will and won’t mind you talking about (still, ask if you’re at all unsure). If I’ve written about it on my blog, you can talk about it.
In fact, please talk about it.
(I retain the right to retract this statement if I happen to have some sort of Britney-esque breakdown)
Every now and then, I get a very special kind of message. Sometimes it’s on Facebook, sometimes it’s Twitter, sometimes it’s a blog comment or a direct email. They come from strangers, from people that I’ve never met and they tell me thank you.
Their senders are healthy, they tell me that they’ve learned about CRPS or chronic pain through my online efforts and that they care. Sometimes they tell me that my words have helped them to understand their friend or family member who lives with chronic pain.
They warm my insides with a special kind of special feeling. I love connecting with other people in pain through this blog and social media, these relationships have helped me to retain my sanity on many occasions. Most blogging niches have some sense of community and I love the one that I am a part of, however when I reach an audience wider than that then I feel like I have taken one more step.
I have raised awareness.
Somebody out there knows about CRPS because of me. One more person is withholding judgement against those with invisible disabilities. One more person is unlikely to assume that a chronically ill person is a hypochondriac, simply because they couldn’t understand or comprehend the truth.
Maybe that person is a nurse. Maybe that person is physical therapist. Maybe that person is going to be a doctor one day.
Should people post about their health on Facebook? Obviously, I think that the answer to this is yes, if they want to. Our health is a huge part of our lives, be it well or not. Facebook is a place to share our lives and those that want to share the parts that include their bodies should feel comfortable to do so.
How about the health of their loved ones? Yes, again. Especially if their loved ones are engaged in efforts to raise awareness.
I think it’s also important to note that the health of our loved ones can have a huge impact on our own lives, that’s what love does. People who love those with chronic illnesses can have a lot to cope with too and should not always feel like they have to keep their mouths shut simply because their partner/sister/mother/child is suffering “more”.
Shockingly, this isn’t going to be the only thing that I have to say about raising awareness during CRPS Awareness month. The day after tomorrow holds a prompt from which I shall be writing more on the topic. I don’t know where this version of me that is able to write every day and even plan ahead came from, other than the distant past, but I’m glad to have her back.
If all this talk of Facebook has you wanting to connect with me there, please like the Rellacafa page and add it to your interests.
Or, go and post a status update or link that shares awareness about CRPS. Because you totally have permission to do that now.
Thanks so much to everybody that has been supporting me in the NHBPM challenge! If you like what I am doing, please share these posts with the people that you share things with or click that little thumbs up. It’s CRPS Awareness Month, which is why I’m choosing to disclose a little more about my health on a daily basis. The more awareness that we can raise, the easier it will get for people who are navigating the choppy waters of chronic pain.
Love & Kisses From The Digital Age,
This post written as a part of National Health Blog Post Month, run by WEGO health. Check out what people have been contributing via #NHBPM on Twitter, or joining the NHBPM Facebook Event.