29 August 2016

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

Carly Findlay looking into the distance. Wearing a hat, blue dress and floral top.

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."

Carly Findlay and Tara Moss

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."

Carly Findlay and Dr Susan Carland

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 Roger and Carly Findlay

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.

Did you like this post? Did it help you or make you think? Please consider buying me a drink!



  1. "I have a disability. I live the discrimination and the ableism and the pain."

    I agree, and other people should not be using social justice to put down and demean you. That is a perversion of what social justice is. Asking you to examine your privilege is one thing if you're showing your ass. Telling you in essence that you have it so good so stop whining is something different, and it's unacceptable.

  2. One of the most powerful posts I have read this year. I'm so glad that you are using this platform to share your experience. Much love to you

  3. Such an important post, Carly, and very well written. Everyone uses the aeroplane analogy for mothers - put your own mask on before you help children - and I think it's just as fitting here. On top of the awareness work you choose to do, there's the work you end up doing because people contact you, or the incidental awareness 'work' you do simply by existing with a visible difference. Take care of you xx

  4. Thank you Carly. Something I've learnt to accept is that there is always some whose situation/suffering/burden is greater than our own but this does not minimize what we are living and the impact it has on our lives and our loved ones. We/you don't need to apologize for that.
    Self-care for women is a passion of mine. Particularly women who lead lives supporting others. It comes in all shapes and sizes yet is as vital as oxygen and water. Do what it takes to take care of you.
    Thank you for all that you do.

  5. <3 We're so glad to have your voice out there Carly, I hope you get the self care, as well as the community support you need to keep going- & I'll happily throw some vicarious love your way <3

  6. Such a great article Carly. So many things to consider and I am so happy that your voice is out there. I think it's really important to recognise that it can take its toll. It can be so exhausting to constantly educate and have so many questions, advice seeking etc from everyone I'm sure.
    I think you are the shit! Yes.
    And I love your balance, the cute outfits, the watermelon face etc. Total cuteness.
    I hope you have a beautiful day full of cups of tea and crumpets or whatever floats your boat, and know that you are appreciated by so many. Your voice is so important. But so are you. Yup xxxxxx❤️

  7. Thanks for sharing this. I can relate. About five months ago I started working for a disability website. I think it's one you're not a particular fan of, but regardless… My job involves reading at least a dozen stories every day written by people with disabilities and/or their families. I knew when I took the job that it wouldn't always be easy, but I didn't really think about the fact that I would sometimes be reading stories from parents whose child died. The first one I read was a gut punch. I can cope with many of them now, but when one of my best friends passed away a couple of months ago, I had to ask others to handle them for a few weeks.

    There is such a diversity of experiences. Many of our writers are positive and strong advocates. Some are afraid of society or of what effect their condition may have on them now or in the future. Some are bitter and angry. Some deal with internalized ableism or project their unhealthy feelings about disability onto their loved ones. We don't publish those stories, but we still have to read them, and respond to them politely.

    We have many, many people who hope we can help them in some way, whether it be connecting them to others with similar experiences, spreading the word about an incident of discrimination they faced, or asking readers to help them get a treatment or piece of medical equipment they desperately need but can't afford. We talk to people who have misinformation about what they can and can't do in their situation, or who don't know there's a program that could help them. When I communicate with them, I try to offer a little bit of support, something I've learned from my experiences. But I have to make choices about whom I will invest in emotionally. I have to know which issues are triggers for me, and just respond politely and not get involved in those situations.

    Sometimes I have to say I can't deal with a particular person or circumstance, and ask someone else to do so instead. I felt bad about that at first, but now I know it's not a sign of weakness. It's a sign of strength and knowing my own capabilities.

    It does take a toll. Some days are more difficult than others. It's hard for me because I often spend my days off dealing with issues related to my own disability, like going to doctors' appointments or dealing with the complicated system of rules and paperwork that allows me to have my job and still get disability benefits. I also have my own blog to build a readership for, and other interests and business opportunities I'm pursuing. I don't always get enough time for self-care. But I do try to do something fun every Saturday, even if it's just taking one of my dogs on a run around downtown. It sounds like you understand the importance of self-care, and I hope you can find methods that work for you.

    We all have the ability to make the world a better place through our advocacy and actions. However, we can't save or help every person. Like triage in an emergency situation, we have to decide who we can help and who we can't. However, that doesn't mean those we don't help are necessarily beyond help. It just means we may not be the right person to help them, or they need to get to a place of wanting to help themselves first.

    I hope you can find a balance. Please know that your voice is really important and valued.

  8. This is one of your best, Carly. Absolutely brilliant and so important. I have been feeling a lot of the same things lately.

  9. Carly this is great. As someone who had struggled to be useful to anyone else during my own personal health crisis this year, I can relate. Take whatever time you need for you.

  10. Fabulous stuff, Carly. Just sharing here in case it is useful for you or for any others... Rape and DV Services provide support to professionals experiencing vicarious trauma in their work. I think you would be included in that. I've heard very positive things about them from advocates I work with. Please be gentle with you. You make such an important contribution to this world; it must be protected! :-)

  11. Thank you. I can truly relate. While it is a passion to advocate, and offer help, it can be very overwhelming. What a breath of fresh air to know I am not alone, and read your perspective along with the perspectives and input of your friends and advocates here.

  12. Excellent article Carly... the lines are so blurred now, and there is part of me that understands so well that your unique and unaltered voice is what makes you so effective, and part of me wonders if some professional training in handling the trauma that naturally comes with providing support (which you are doing) is needed?? As part of that self-care? I don't know, but I do know that you open up new worlds and new ways of looking at those around us all. You do good work. Be proud. x

  13. I follow you precisely because I learn, and am challenged to adjust my thinking, from the issues you discuss. I appreciate what you do and the effort you make to encourage discussion, sharing and the way in which you speak out. I've been meaning to say it recently, this post gave me the motivation to say it publicly instead if sending you a message. Thank you for all that you do!

  14. Important and powerful writing Carly. This gives us a true insight into what you do and what you live every day. Take care of yourself for you, your loved ones and those that need you. It's your life first and foremost. That you choose to help others is a bonus for them and not a right. You come first. Take care. You are a wonderful person. X

  15. Important and powerful writing Carly Findlay Morrow. This gives us a true insight into what you do and what you live every day. Take care of yourself for you, your loved ones and those that need you. It's your life first and foremost. That you choose to help others is a bonus for them and not a right. You come first. Take care. You are a wonderful person. X

  16. Thank you for writing about this Carly. Over 20 years of working in nursing and care sectors (most recently with women with cancer) and I'm only now realising the importance of self-care. Here is a piece that was helpful for me. Take care x


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