With chronic illness do you #DeleteFacebook or not.png

You know when it comes to privacy I am aware not to allow certain apps access, not to take those infernal quizzes on Facebook, to make sure all my privacy settings are up to date. But I am equally aware corporations have profiled me since I bought my first credit card and since I did any survey. I watched a documentary on it and if you think Facebook is where the privacy leak is coming from, well, you are mistaken. It is just one tool that was utilized until someone found out about it. There is just a surprising amount of data on us. That is sold and used to predict our buying habits to analyze trends. So you do your best to stop any obvious leaks in the boat being fully aware that the boat flooded a long time ago.

Should you delete Facebook? That is entirely up to you, really. It won’t change the situation in any fundamental way and Facebook is making changes that will help us secure our data. A personal choice really.

But I won’t. 

As someone with a chronic illness who currently cannot even drive, I rather like social media like Facebook for the only interaction with others I am getting. Other than doctor appointments and going for coffee with my mom. And my spouse, of course. Still, I crave a bit of connection while at home.

  • I’m not working right now so no interaction with co-workers
  • I can’t drive so no random encounters with people during the day
  • And I cannot even do much during the day without aggravating symptoms, so I have to watch that too. So what can I do? Very little.

Fact is, social media like Facebook gives me:

  • A temporary distraction from mild to moderate pain. Not high pain, that is just too much to handle online but sometimes I try anyway.
  • Interaction with other people in some form or another.
  • Support from support groups when I need it. And a way to connect with others who have my conditions. There are no physical support groups around here.
  • A way to spread pain and chronic illness awareness through my Page and connect to people through advocating for awareness.
  • A way to chat with people about my hobbies. Writing groups mostly. Which there are none physically around here, even if I could drive. But there are all sorts of hobby-related groups. And I belong to one that is just for people with chronic illnesses as well.
  • A way to connect with people who read my books. This is more of an author thing, but it applies to anyone who runs a business of any sort. I have only a tiny author platform but it is there and Facebook is part of it.

So I find a lot of uses for Facebook really. From hobbies to pain support. And really, when it comes to support groups or connecting with others who have similar conditions to us, this isn’t to be underestimated.

  1. We feel less alone.
  2. Less isolated.
  3. We get information we never had before.
  4. We can rant without any judgment at all. Bad pain day? They get it.
  5. People we connect with who have the same illness, get it. They just get it.

I remember a time before it. Had to find other support groups, that people don’t post in often, because they just don’t have the numbers and the structure isn’t the same. Obviously, very little information sharing. I had no one to connect to about my interests and hobbies. I did feel very isolated from my illness because I didn’t think anyone really understood what it was like to endure it. And I had no one to relate that experience to. One of the reasons I started blogging in the first place really. But the fact is, without Facebook I would find another place where we can connect. Because I need that connection. Twitter and Tumblr are others I do use as well.

And I am far from alone in using social media to help distract from pain and relate the pain experience. Or to connect with others.

Read: The social media cure

She found a cluster of “pain worlds,” places where people suffering from invisible illnesses like fibromyalgia, migraines, Crohn’s disease, and arthritis can express themselves not on a numerical scale but through a network of selfies, confessional diary posts, and memes. These networks have created their own “alternative pain scales” that measure “social over physical aspects of pain that are often unacknowledged in clinical pain assessments,” Gonzalez-Polledo writes. Social networks “offer opportunities for people without pain to better understand the experience of having pain,” she continues, but they also offer chronically ill people the chance to convene with others who understand what they’re going through. They offer relief, if not from the symptoms of pain, then from the burden of explanation.

To some extent via social media, we explore our own pain selfhood. We can work out what we think of our own pain self and coping. We also share in the commonalities of the pained experience. We are all familiar with similar coping processes and coping strategies. And there is comfort in the fact that others are familiar with the very process we are in fact going through.

I asked Erica Lupinacci, co-founder of the chronic illness support network Suffering the Silence, about this trend. People living with invisible illnesses “experience a lot of judgment and misunderstanding because we ‘don’t look sick,’ ” she told me. These ostensibly normal images tell outsiders that “though you may not see it in our appearance,” chronic pain is “something that affects our identity and all aspects of our life.” For people inside these social networks, sickness and pain aren’t just things that happen to them—they are a core part of who they are.

We can be who we are among others with chronic illnesses. Our complaints are not exaggerations. We don’t feel like a chronic complainer for having a bit of a rant. And being chronically ill is a significant part of our lives. A massive stressor. Something we cope and deal with every single day. Something that impacts our entire lives. It is difficult to talk about that with others who do not experience it. Or don’t want to know about it.

When patients are asked to rate their pain on a scale from zero to 10, they may report higher levels of pain in an attempt to communicate their “helplessness and hopelessness.” The problem is not that it hurts more; it’s that it just never stops hurting. For some patients, Instagram and Tumblr are better places to express that feeling than the doctor’s office. As Ballantyne and Sullivan put it, doctors are still struggling to “adequately capture the burden or the meaning of chronic pain for a particular patient.” A fellow spoonie just gets it.
Fact is, social media is our release. It helps reduce suffering when we do it in moderation. We may not be able to control the physical pain, but managing suffering, in any way possible, is something we endlessly struggle to do. And some ways are to decrease isolation, connect with others with the same illness, and distract ourselves from the pain.
Facebook is one of the social media avenues I use to do that. I wouldn’t delete a lifeline like that.

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