Privacy and Pain

privacy

 

In this article about Mark Zuckerberg, creator of Facebook, author Lev Grossman describes the early days of the internet as follows:

The presiding myth of the Internet through the 1980s and 1990s was that when you went online, you could shed your earthly baggage and be whoever you wanted. Your age, your gender, your race, your job, your marriage, where you lived, where you went to school – all that fell away.

By contrast, the viewpoint espoused by Zuckerberg, and the concept on which Facebook is built, is “the fact that people yearned not to be liberated from their daily lives but to be more deeply embedded in them.” Today, it’s all about connecting, networking, sharing everything with everybody. You don’t get to be different people in different places – you have one online persona that you present to everyone.

Well, fine, but I don’t really think life works that way. Not all of us want to share everything with everyone, but at the same time, it’s not fun to be left out. So we do a sort of delicate dance between the right to a private life and the desire to be connected to people. Since becoming sick, I have discovered in myself an intense need for privacy that I never realized I had.

This blog is anonymous – my real name is in no way connected to it. This has given me the freedom to talk about my disease and its details in a way that might be of help to others who are going through the same thing, and it’s given me an outlet. But over time, this privacy has eroded somewhat. There are one or two people in my “real life” who have also seen this blog, and I need to be conscious of them when I write. There’s also another problem – I have become “Facebook friends” with several of the people on one of the RA boards I frequent. I have not shared my health issues with any of the people in my professional life, and so I never mention them on my Facebook page. The people from the RA board know this, and so far they have been completely respectful of this boundary. But it does leave me feeling strangely vulnerable – people from my “sick life,” who I have never met, have access to my “real life.”

I’m finding myself at an awkward spot with this right now. I’ve been going through some incredibly painful things in my personal life right now, things that are not about my illness. I have not even shared them with most of the people in my “real life” – just a select few. This blog could be a place to talk about them, if not for those few readers who actually know who I am. The RA boards could also be a place to talk about them, but I’d be concerned that someone might make an accidental remark on Facebook.

I don’t know how to explain why I can talk openly on this blog about the details of my illness but them clam up when it comes to other aspects of my life. When I was first diagnosed with RA, I was completely silent about it for about a year, only telling my immediate family and a few close friends. Maybe I needed the time and privacy for processing. It’s possible that the same thing is happening here. I’ve been reading blogs from others in the chronic illness world who are sharing their struggles more openly than I am right now. Reading them helps me, and I am grateful for them - maybe they are braver than I am? But I’ve also read blog entries by others who are wrestling with the same privacy issues as myself.

Right now, I feel a strong need for an anonymous place to talk about everything, but I am struggling, always keeping in mind that I don’t necessarily have complete anonymity here. The result has been complete radio silence on this blog for a long time.

Darn you, Mark Zuckerberg.

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6 Comments

  1. MAllen says:

    I understand the privacy in regards to RA. I only just started sharing about RA in my real life over the last year. I’ve had RA for five years. I pray that things are okay and that you have some people you can share with. Take care….

  2. Genny says:

    I came across your blog about a year ago or so I was being put on Remicade and was frantically searching the internet for any miracle answers. I can’t remember exactly which post I read but it was about your son and husband and reading your post I felt like they were my words…we have the same illness the same med and a son the same age. I was captivated by everything I read. At one point I copied a paragraph and sent it to my husband and he responded ” you wrote this? When did you start a blog?” I said how crazy it’s not me!
    It’s pretty freaky the things you write resemble what I feel.
    While I understand your need for privacy don’t cut yourself short on how your words can affect someone feeling alone in a disease and finding someone with the same struggles.
    I hope you find a balance and things get better for you.

  3. Britta says:

    I oddly understand. When some of my real life friends started reading my blog, I almost felt like I couldn’t say the truth anymore. But my blog has slowly turned to a healing aspect for not only me, but for my friends, because they are finally seeing what it is like everyday for me.

    I hope you continue to write on here.

    You too, have helped me more than you know, and I thank you for that.

  4. Carla says:

    You’re right, it’s a very delicate balance. Just know that whatever you decide to share on this blog, that you have all our support and that we read your blog because we’ve come to care about you. Good luck with your struggles.

  5. Helen says:

    I understand. I began my blog entirely anonymously, too, intending it to be unfiltered and uncensored. Over time, and inadvertently (I think), I’ve created a blog persona that doesn’t always leave room to be uncensored. Blog-me is basically the real me, but there are things I leave out. Maybe there are some things I do in my real life that blog-Helen wouldn’t do. And there are things that happen to me in my real life that I might tell some of my closest friends but would never reveal on my blog. It’s a strange space to be in. It’s not the anonymous, say-anything medium I thought it would be.

    All that aside, I wish you strength and peace in whatever below-the-surface struggles you’re facing. Even if we don’t share everything with each other, I do know that every RA and chronic-illness blogger in this community cares.

  6. Hi RD,

    I appreciated reading your post about privacy and the blog vs. real life persona conflict. I too am anonymous in my blog. I do it for professional reasons. Other than keeping my name aside, ThriveWithRA.org has thankfully been a place of truth for me.

    I’ve been recently diagnosed with Severe RA but have had it for a year. I am finally checking out some others’ RA blogs, now that May/Rheumatoid Arthritis Awareness Month is over. Thanks for your thoughts!

    I also wanted to congratulate you on your Doctorate. Amazing achievement, even without RA. Empowering for the rest of us!

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