Disclosure & Chronic Pain: How Much Is Too Much?

Dear Audy,

Day four of NHBPM has me thinking about disclosure. It’s a two-sided topic for me, as a person living in both the real and the blogging worlds. Sharing online with a varied audience is different to sharing face-to-face with friends. Both situations call for consideration when choosing how much information I choose to disclose about my health.

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I’ve written before about Interacting Online: The Joys, The Struggles & Surviving Unharmed. Mostly, it boils down to two things: only sharing things that I am comfortable for anybody in the entire world to read and only telling my own stories. I always endeavour to not name anybody that doesn’t want to be named, I think that’s a responsibility that can benefit all bloggers.

This blog is soapbox through which I can spread information about living with CRPS to a large amount of people. Sharing my stories helps to raise awareness, so keeping secrets about my health on this blog would be counterproductive. By blogging about the ups and downs, the changes and the weirdness, I hope to paint an accurate picture of what life is like for me and by extension, many others who are living with chronic pain.

Writing honestly about Complex Regional Pain Syndrome has helped me to reach people all over the world who also live with the condition and relate to my posts. Often, disclosing a piece of information about my health that I thought was particularly strange or confusing will result in messages from others who have experienced the same thing.

Being able to reach out and know that I’m not alone has helped me enormously whilst living with chronic pain.

Choosing what to disclose in real life can actually be a lot more confronting than for a world wide audience of anybody. Writing something and inviting people to read is a little bit different to trapping somebody in a conversation about your health that they might not be interested in or comfortable with.

It’s kind of like the difference between putting your ad on a billboard for the world to see and sending door knockers directly to people’s houses.

Illness makes a lot of people uncomfortable. This is completely understandable, it can be a terrifying thing. CRPS is not something that many people know much about and sometimes after asking for an explanation, I can see the regret in their eyes as they try to process just how bad this thing could be.

Sometimes, it feels like sharing information about CRPS is like getting in somebody’s face with any sort of horrible situation that they can’t necessarily do anything about. In my experience, people generally stop paying attention to somebody constantly prattling on about awful things that they can’t stop.

“Children are starving in Africa, you know.”

“Millions of people are dying from cancer, you know.”

“The polar bears are going extinct and it’s all our fault and there’s nothing we can do to stop it, you know.”

Is that the guy you’re going to be excited to see at parties?

This is one of the reasons that raising awareness about CRPS is so important, so that it’s not a shock and horror situation every time a person living with the condition makes a new acquaintance.

Sometimes, the discomfort at learning I have CRPS seems to be a genuine, heartfelt wish that they could do something to help, offer me some piece of hope or something bigger than “You’re coping so well, keep doing that”.

Other times, it seems to be a genuine discomfort at illness itself. This is a perfectly understandable reaction, illness is scary and a story like mine – healthy one day, crippled the next – is one of the most terrifying scenarios of all. Nobody wants to find themselves disabled. Well actually, some people do, however I expect that nobody wants to find themselves in chronic pain. Probably not even those people that get off on pain, they might not find it so sexy if it was impossible to turn off.

I am a walking, sometimes limping, sometimes rolling reminder that this could happen to anybody. This fact pokes at a lot of people, some of them in areas that are hidden behind the things that they consciously know and accept about themselves.

Medical phobias, such as that of hospitals, blood and needles are fairly common. I don’t begrudge anybody for having these fears, it’s up to you to choose how to respond if you recognise them within yourself. Personally, I am always on a mission to overcome my fears because whenever I do, life looks better from the new perspective.

How much I disclose about my health in a social situation depends on both the vibe that I sense from the other person and how I am personally feeling that day. It can be easier to answer “How are you?” with “Fine, thanks”, rather than starting to talk about my health problems. Often, I am fine in that moment, fine enough to be up and about and that’s fine enough for me. People who want to specifically know how my health it will specifically ask, it’s really not a complicated thing.

Some people who live with CRPS and various chronic illnesses view this sort of response as fakery on my behalf. Plenty of people believe that honesty means always telling every part of every thing, but I don’t see it as such a black and white thing. Not going into details about my health because I’m trying to enjoy myself is a prerogative that I’m going to continue to own and use as I see fit. This is primarily about managing my own discomfort, although I’m also wary of disrupting the comfort of others, especially in a party setting where people didn’t turn up for a lesson.

Nobody needs my story and my message shoved down their throats. People don’t taste things that are forced upon them in that way and I’d rather have the information that I’m trying to share digested properly.

How much I choose to disclose about my health in a social situation also depends on just how bad it has been in recent times. From July this year, until now, things have been pretty rotten. When catching up with someone, I could go into details about my downward spiral, or I could simply say that things have been not so great lately. Sometimes just disclosing that amount of information is enough and then we can get on with important discussions about The Walking Dead and Internet memes.

The most important thing for me when it comes to disclosure is to do what I think will make me feel the best. Sometimes that’s keeping things to myself. Sometimes that’s educating somebody I’ve just met (because sometimes they are genuinely interested).

Being a blogger gives me options when it comes to places to express myself and I can choose to express different parts of me here and in real life. None of the parts are fake, none of them are lies, they are simply what I choose to share in that moment.

We’re complicated things, us humans. Controlling how we disclose different parts of our health is ultimately up to each individual, this is just what works for me, at the moment.

Tell me, Audy, what are your thoughts about disclosure and chronic illness?

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 & Honesty,
WEGO, CRPS Awareness Month, #NHBPM

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.

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  • 2 thoughts on “Disclosure & Chronic Pain: How Much Is Too Much?

    1. Della

      Striking the right balance can be a challenge. I think you’ve defined as healthy a balance as can be had. Watching people’s eyes generally tells me when it’s too much information.

      1. Hayley Cafarella Post author

        Yes, it’s all in the eyes! They just sort of get a bit of a vacant look or are suddenly transfixed by something over your shoulder…. hehe, our sensitivity helps in this department, you can feel when somebody is paying attention and interested too 😀

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