Overwhelm – the perils of living what I am writing about.

There's a funny irony in writing this. I started writing this in mid July. I called for quotes, did some research and expected to knock this out in an evening – writing from personal experience is always quick. Then I got so overwhelmed that I couldn't finish it.

I could feel the overwhelm creep up a few weeks before I became sick enough to go to hospital. My skin was constantly sore, and my head and face pounded with tooth pain. I’ve been overwhelmed because I'm an online writer, and also by seeing the abuse that’s happened to other online writers lately. I became agitated at what I perceived as snippy comments, and at people who invalidated my experiences of microaggressions (more on that in a future blog post). A few months earlier, a former friend had a public dig at me, saying I was too privileged to be severely impacted by my disability, and so I've carried the weight of that guilt around like a falsified diagnosis.

I felt like I was drowning in issues - some that people expected me to fix. Every time I logged onto social media, there would be another disability issue to address, to grieve over. Of course, I don't have to take those issues on, but there’s a certain responsibility as a disabled activist with a media platform to do so. I couldn't breathe.

And then, I did get sicker - a lot to do with the traumatic extraction of my wisdom teeth, and a little to do with the overwhelm I was feeling.

I voiced that I was feeling overwhelmed on social media. It was met with an outpouring of support (thank you). And then a loyal commenter reminded me to be grateful I have a platform to express my opinion (I am so grateful). She went on to remind me that being a change-maker is "not like we are in the trenches, or nurses in an emerg[ency] ward or nursing home, or in court fighting. Let's not take ourselves too seriously people."

Thud. I think it hit harder because I was already feeling overwhelmed.

I have so much perspective. I acknowledge my privilege and recognise that I earn a modest side-gig wage, and am working from a safe place. I'm hardly the light-hearted diary-style blogger I was five or six years ago. Of course, some of my posts are frivolous - I love fashion and I'm such a fangirl. And I must break up the serious with the light-hearted, so I try not to overwhelm readers with only disability and appearance diversity related issues.

But I take my work very seriously. I share my experiences so others don't feel so alone, and for my own benefit of course - so I don't feel so alone either. I want to ensure my opinions are informed, so I research a lot before writing. I aim to share a wide range of perspectives about disability and appearance diversity on social media - so readers aren't just hearing my voice. (Hence the amount of quotes in this post.) I also feel I have a duty of care to those I'm writing and speaking to - because some people are so desperate for medical and emotional advice, and hope.

I also live what I'm writing about. I have Ichthyosis. I have a disability. I live the discrimination and the ableism and the pain. I'm in touch with hundreds with ichthyosis and reading their stories can take its toll too.

It's not like I'm looking at or covering these issues from the outside.

I find it a little worrying that change makers can't put their hands up to say they're feeling overwhelmed. Self care is so important

When I see videos saying Mui and Hunter have a terrifying condition, when I see Jack and Evan's photos misused on Facebook, when I see hate speech below a video about little Evan, and an airline discriminating against a little girl with Ichthyosis, it hurts. When I see pictures of kids in pain in Facebook groups (well intentioned, of course), or their photos being stolen, I get so angry. I cry. I fire off emails to social media heads. I gently educate parents about the impacts of oversharing about their kids' disabilities (which is often met with anger, but sometimes understanding). I despise the way most media companies represent Ichthyosis, and so I rant. I check in with people to see how they're doing after they've faced discrimination. I recommend they see dermatologists and counsellors. I meet with families and individuals (this is a lovely thing!). I worry, keeping strangers' secrets about depression, guilt and grief, being too scared to face the world, even suicidal thoughts. And sometimes I even wish for a cure for this goddamn condition that's so misunderstood. And there's no doubt this impacts on my own health. These are my people. It hurts.

As well as stumbling across stories and photos in my social media feed, I receive calls for help by email and private message. Recently, I’ve been asked to provide advice about constipation that may be related to Ichthyosis, been asked to diagnose based on pictures of sore skin, and asked for suggestions about navigating love when your partner's family sees Ichthyosis as a curse.

I’ve received several requests to tell my story to tabloid media. And I was approached by several aid workers plus a journalist from our national broadcaster and an aid worker in Kenya, trying to reduce the stigma around Ichthyosis.

I endured some was some stalkerish, aggressive behaviour which was very scary.

I’ve also written a few articles on difficult topics - and was torn to shreds by a few people for doing so. While I don't expect agreement on everything I write about, the tone of how people disagree can sting, you know?

I'm not listing these things for you to say "what a hard life". But I want you to know the reality of what I encounter, on top of living with my condition - which has been incredibly challenging. I am living the things I write about.

Prior to my recent hospital stay, I took myself to the hospital outpatients to get some stronger antibiotics and painkillers. One of the senior dermatologists told the resident about my blog, and how it's such a big resource for dermatologists, patients and families. I told the dermatologists about some of the reader questions I've been answering lately, and they reminded me what a big thing it is, and that these questions make me reflect on my own experiences. She was so right. Perhaps what I'm experiencing is vicarious trauma.

Tara Moss wrote about vicarious trauma in her book Speaking Out. She outlined her experience of other people telling their stories once she had told hers in her part biography The Fictional Woman.

"It was a beautiful experience, if emotionally draining... I had not been fully prepared for the outpouring of support, emotion and personal stories from ordinary people."

She went on:

"I could not have imagined that from that moment on, there would be men and women telling me about the child abuse they had endured...there would be readers telling me about the relationships they had fled; and there would be women and girls telling me about the abuse they were currently experiencing in their own homes, sometimes in book signing line-ups, or on the street."

Tara wrote that she "couldn't switch off when I heard these stories as a psychologist or other professional learns to do. I did not have 'office hours' as it were. My exposure to this trauma was random and unexpected.

She also mentioned the vicarious trauma experienced as UNICEF ambassador in Syria - seeing children suffering (even being killed) in refugee camps.

"It's the little details that make you crack. In this instance, it was the reality that over a dozen small children had been electrocuted to death while walking or playing in a particular area of a camp with bad wiring."

I acknowledge Tara's experiences of volunteering in Syria and my experience writing, speaking and living Ichthyosis are different. I'm not in a war zone. I haven't experienced sexual assault. But I live what I’m writing about. And people tell me their stories because I tell mine. That's such a privilege. But it comes with a cost.

The support for vicarious trauma in a professional setting is much better than that for a blogger.

I know others who are affected by being on, by living what they write about - they're from all types of diverse backgrounds. I know women who talk about domestic violence and receive rape threats. A friend survived a terrorist attack and is regularly vilified for speaking out. Another friend talks about racism, which is met with racism. The amazing young Greens member Jason Ball, who champions LGBTIQ rights was recently called a homophobic slur via the defacement of a poster during his election campaign, and responded so diplomatically. These people are I n the thick of it, too.

I asked my friend Dr Susan Carland, Muslim academic and writer, what it feels like to be in the thick of the issues she writes and speaks about. Dr Carland is on the receiving end of Islamaphobic abuse regularly – she decided to donate $1 to UNCEF for every hateful tweet she receives.

"It's hard", Dr Carland says.

"There are certainly times when I feel despondent, and things feel futile, or overwhelming, I think especially at the moment when it's not just anonymous trolls, but elected leaders and well-known media people contributing to the vitriol. I keep speaking about it because I think it needs to be discussed and also because I feel that often people who aren't Muslim are unaware of what is happening. And if people don't know what is happening, it's hard to convince them of the seriousness of the situation."

She told me what she does for self care.

"Having a break from social media, and the media in general helps when everything feels grim. Getting lots of sleep and exercise is another useful self-care tip, and spending time with the good, uplifting people in my life all helps and provides important perspective."

Another friend, Tarang Chawla, Ambassador for Our Watch, White Ribbon and safe steps Family Violence Response Centre, has been prominent in the media since asking a question on Q&A in July. I wondered how he’s coping, because he’s living with a sombre reminder of what he’s speaking out about every day.

Tarang’s sister Niki was murdered by her partner in her sleep on 9 January 2015. She was 23. Since her murder, Tarang has been doing advocacy and campaign work around the prevention of family violence. He tells me it’s "mostly it's an expectation of myself, than from others. I think that because it's so close to home, I find ways to do work that I think is important."

Tarang told me it can be difficult to be vocal, but his strength comes from the memory of his sister.

"Sometimes it can be really hard, but I think about my sister in life, her positive energy and that gives me strength. Behind every statistic about men's violence against women is a human story. Through my advocacy work, I've met so many brave women and children and they're inspiring people. It's the human element that always drives me. I have a platform and a voice and so I use it as much as I can to support bringing about the changes that will prevent violence."

He said he’s not so great at following advice about self care – he thinks he’s better at giving advice to others.

"Having someone to talk to is probably the most important. And becoming OK to talk about it, whatever that may be."

There's that modern-day adage of "you put yourself out there online, you should expect abuse back". I don't buy that. And the overwhelm I am writing about is not abuse. It's the expectation to be ‘on’, and the responsibility to serve the community well. I've also got a mind that doesn't switch off, with about 15 pieces of writing in draft, all quite serious topics.

Michelle Roger who blogs at Living with Bob also knows the overwhelm associated with living what we write about. She told me:

"We live it, plus we hold all the needs of those who write to us behind the scenes, those who write saying they're going to take their life and are at their wits end, That is so taxing and you can't just clock off. Plus the whole if you dare to have an opinion you get torn to shreds."

Michelle empathised with me when I voiced my overhwlem on social media.

"You never have to apologise for saying you're overwhelmed, Carly. You're a human being and entitled to express yourself including when it gets on top of you. You don't have to burn yourself out by being on all the time. Self-care is important and it's what makes it possible to keep going. Advocacy and activism is a 24/7 job and you are often holding not only your own personal issues but also the needs of the multitude who contact you behind the scenes, many in quite dire straits. You can't just clock off at 5pm. Not to mention the people who tear you apart because the latest article you wrote isn't what they wanted to hear. You do it because you love it and can't imagine not doing it, but it takes it's toll. Take care of yourself."

She also blogged about being ‘on’ - living it - last year:

"When I became ill back in 2006 the lack of awareness about any form of Dysautonomia was a huge impediment to finding a specialist and finding a diagnosis. When I tried to explain to others what was wrong, even those who I worked with in health, I was met with a lot of blank stares. With education having been a large part of my then job description, education, awareness raising and advocacy was a logical move as I became a full time patient. I have now spent years doing just that. Not only for Dysautonomia, but invisible and chronic illness and disability in general. I enjoy it and it is a passion.

But what I did not realise was that in becoming ill I was also assigned a secondary job complete with Key Performance Indicators (KPIs) and people would happily and at times aggressively, point out when I didn't meet those KPIs. It was clear I was expected to be ON at all times. And that my workload, as decreed by others, was increasing exponentially.

The problem with being ON 24/7, and I'll admit I did internalise that philosophy and often beat myself up for not meeting expectations, is that I am also a human being. A chronically ill human being."

Michelle, Tarang, Susan and Tara are all advocates of self care. It's something I need to take more seriously, and I have been since becoming so unwell. It's also been good to reflect on the work myself and others do - truly living it - and to acknowledge that it's important and has an impact on others.

When I was at university, I did an assignment on journalism and trauma. I learnt about the Dart Centre for Journalism and Trauma – it’s "dedicated to improving media coverage of trauma, conflict and tragedy." The website has some great information on self care, which could be useful for self advocates and activists of all types.

While I’m not reporting from war zones or writing about assault or murder, telling my own story and writing about wider disability issues carries its own trauma. As long as I'm living what I write about, I will take what I do seriously. And so I must take self care as seriously as I take speaking out about the discrimination, ableism and pain of living with a disability.

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