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Flic Manning:  We acknowledge and pay respects to the traditional custodians of the lands on which we record, and especially to those who may also be living with a disability. Welcome to another episode of the Sunflower Conversations, where we will explore a variety of disabilities, the way in which people experience their disabilities, and discover the opportunities for society to make access and inclusion improvements for everyone. My name is Flic Manning and I'm your host.

Hi everyone. My name is Flic Manning and like many of the guests on the Sunflower Conversations, I'm also disabled. Some of my conditions include Crohn's disease, Lupus and Raynaud’s syndrome. Today though, I'm joined by someone from our amazing community who brings deep insight into the lived experience of hidden disabilities, James Gunn. James, welcome to the show. 

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James Dunn: Thanks Flic, great to be with you.

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Flic Manning: So excited for this conversation. Now, James, you were diagnosed with postural orthostatic tachycardia syndrome, also commonly known as POTS, and myalgic encephalomyelitis, also known as chronic fatigue or MECFS commonly, after falling ill in 2018. Can you tell us what the road to diagnosis and day-to-day management of these conditions has looked like for you? 

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James Dunn: Yeah, sure. Look, the illness appeared pretty suddenly in May, 2018, and it was a pretty kind of quick descent from there. I was a really fit person. I was healthy, energetic in my late thirties, a lot of busy work, family, social life, I loved to run and swim and ride, and I was coaching my younger son's AFL team at the time.

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And then I literally woke up one day and experienced a lot of dizziness. Lightheadedness when I stood up and when I was walking around, and I'd find that sort of crash after any sort of short exertion, particularly physical exertion. I immediately started what felt like a pretty long and intense medical journey to try and find out what was wrong with me, essentially.

I went to the GP and because dizziness was a key symptom, I was referred down the neurology path and had a whole series of MRIs and brain scans, other tests, and they were done to try and rule out brain tumors and other conditions. I saw a bunch of neurologists over about six months, and they all had really good intentions, but just couldn't quite put their finger on it. As I was pretty desperate to find answers, I actually Googled my symptoms and found that postural orthostatic tachycardia syndrome, or POTS as you said, seemed to align strongly with what I was experiencing.

So I mentioned this to my neurologist and he agreed. And I was referred to an autonomic nervous system specialist in Melbourne. He prescribed lots of different medications over the next two years, and I took all these, but it didn't change and my condition actually continued to deteriorate. And I was experiencing more symptoms like brain fog, sleeping issues, muscle pain, and the exhaustion I was getting after doing physical and mental activities was increasing. I was finding that mental activity would make my exhaustion worse, which started to impact my work and my time with family and friends. I then spent the next couple of years on a mission to try and find a solution like a lot of people do.

I saw lots of different specialists around the country in different areas. I saw cardiologists, immunologists, functional integrative medicine specialists, physical therapy, just to see if I could get any improvement in my symptoms. I had lots of procedures, including a spinal procedure and others, but unfortunately nothing helped and I continued to decline.Like a lot of people with chronic illness, it was challenging continuing to subject yourself to new treatments and the emotional letdown when it wasn't successful was challenging. My mantra during this time was to  be hopeful, but not expectant that a treatment would work. I think this helped me strike the balance between continuing to try new treatments, but not expecting them necessarily to work and so I wouldn't be let down as much.

But during this time, my cardiologist diagnosed me with ME-CFS, as you mentioned earlier, which I had probably had from the start, but with the onset of more symptoms, it became obvious that that's what it was. By this time, I was experiencing all of the symptoms of ME-CFS, including the main ones of exhaustion, problems with memory and processing information, which definitely became stronger over time, dizziness that was worse when I was standing up or walking, sleeping issues and others. I'd reduced to part-time work by now, but I still wasn't able to experience any improvement and the cognitive challenges were really starting to impact my work. So in 2023, I decided with my medical practitioners to stop work. We saw it as the best way to try and manage the illness and reduce my daily output. Although I haven't seen any improvement in my symptoms since I stopped work, it's a lot easier to cope with daily life now, which is a real positive.

I now have a really structured day of doing mental or physical activities for just short periods with lots of rest in between. I typically only arrange one or two key activities for the day, meeting a doctor or meeting with a team member at some organisation where I now volunteer. There are some days when I'm not doing any activities and I'm better now at accepting that that's the case and resting so I can conserve energy for the next day.

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Flic Manning: I can definitely resonate with that on a personal level. The exhaustion and other things that can come with these sorts of chronic conditions and just the journey that you've been on is really extraordinary. I think anyone that's living with a chronic condition, again, particularly if it is hidden, they've been through the gamut of the medical system, seeing so many different types of specialists in so many different areas, trying so many different types of medical treatments to see what will work. And like you beautifully touched on there, it's the, I guess, the emotional aspect of going through that over and over and over again and putting yourself through that is a really, really big, big thing and an ordeal and you've really got to work mentally on how to cope with that, which you clearly have done. I think anyone that's listening that isn't familiar with it will have gained a lot of insight into that. So thank you for your answer there.

Now, James, you obviously did have a long career in law before stepping away from work, which you mentioned before, to focus on your health. How did that shift affect your sense of identity and what has helped you to navigate that particular transition? 

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James Dunn: To be honest, it did have a significant effect on my sense of identity. I'd spent the best part of 25 years trying to be a lawyer and then working as a lawyer and then growing a legal business myself with a colleague and others. People often say that you shouldn't let your sense of identity be too tied into your work life. And I would often think about this advice over the years and I would try not to let them be too closely tied. But I loved my work and I loved working with other people on big challenges. It wasn't just a job or a means to an end for me. I wasn't the guy who would stop work tomorrow if I won Lotto. So for the first few months after I stopped work, I would try and pretend that it didn't have much of an impact on my identity.

And I'll keep telling myself to be grateful for all the amazing positives in my life, which there are many. But I realized that it was having an impact on my sense of identity and my sense of self worth and my sense of purpose. So I decided to seek help with this transition away from work from a psychologist who was really helpful.  She gave me a few helpful strategies and tools, but the one that had the biggest impact for me was an exercise in reflecting on my core values. I had always equated my self worth and value with working hard and giving a lot of energy to everything I did and trying to help people as much as I could. So when I no longer had the ability to work hard and give a lot of energy, I was really struggling to find my new purpose and value.

She helped me to identify my core values and then encouraged me to think about how could I still live those values without doing things that required a lot of time and effort. And that was a really enlightening exercise for me and it made me realize that I didn't need to spend a lot of effort to have a positive impact. I wouldn't say that I've fully transitioned to my new normal, but I feel like I'm on my way and I've had great help from so many people along the way.

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Flic Manning: Yeah, what an interesting reflective tool and exercise to go through and hopefully anyone that's listening that might be navigating a similar pathway to you right now or any really chronic illness or hidden disability might find that tool to be of use of them too. James, you've also shared that navigating busy environments like transport hubs, large events, things of that kind can be particularly challenging when living with a hidden disability. So what strategies or tools have helped you feel more confident or supported in those sorts of situations with your conditions now? 

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James Dunn: Yeah, I think these types of environments are often really challenging for people with a hidden disability. I had an experience last year when I drove into a car park at a busy location and I was driving into a disabled parking spot. I had my disability permit on the windscreen, but before I'd even finished parking the car, I was halfway into the car park, a guy was shouting out to me and I wound down the window to hear what he was saying and he shouted, you can't park there, that's for people with disabilities. I was still seated in my car at this point and I was still halfway into the car park and I took the permit off the windscreen and held it up to him so he could see it. He kind of looked puzzled and then walked off. So this was someone who had made an assumption that because I could drive a car and I was not elderly, I was not disabled. I'm sure he meant well and just wanted to make sure that the spot was available for someone who was disabled.

But it does highlight a key perception challenge for people with a hidden disability. In my case, I find standing and walking for more than short periods challenging. I love to travel, so navigating through airports where you often have to stand in lines for long periods at check-in, at security, getting on the plane, it's challenging and travelling on trains, trams and buses can also be challenging if there are no seats available. As I was saying earlier, the additional challenge that people with a hidden disability face is that other people don't know you have a disability and that that environment is difficult for you. So you can't always get the recognition and help that you need. Like a lot of people with disability, I usually don't want to have to tell people that I have a disability and that I need to sit down for fear of them potentially questioning whether I'm telling the truth and thinking I'm just trying to get a fast track through the airport or one of a few seats on a train or a bus.

I use a few tools and strategies to to try and make it easier. I definitely plan ahead more than I used to and I check in advance what wait and commute times are to reduce the time that I'm waiting. I also build in additional time if transport isn't running on time so I don't need to rush between trains or trams or buses. I check in advance for areas at an event where I might be able to sit down or lie down. For larger events, I'll actually contact the organizer in advance to find out where there is accessible seating and what their policy is on priority entry access if they're not a Sunflower member and it's not obvious. I also rely heavily on apps, phone apps to help coordinate travels.

I can't afford to really incorrectly judge distances, particularly walking distances. So Google helps to map out routes and shows where there are significant stairs and things to avoid, which is really, really helpful. The Sunflower symbol has also made a really big difference to my experience in these situations as I can just subtly wear it and I know that the staff in those environments will help make it easier in some way.

In the airport scenario, it means I can stand in the disability access line without fear someone's going to come up and tell me I'm in the wrong line and it's for people with disabilities. Had a major event like the Australian Open Tennis I went to last year. I can go to the front of the queue and at the main gates without any judgment and I feel comfortable doing that. The train and the bus transportation is a little bit more challenging, but as more members of the public recognize the Sunflower symbol, I think I'll feel more comfortable asking to take that seat. I think some transport networks are also looking to have the Sunflower symbol sort of imprinted on some seats like the wheelchair symbol and I think that would make a huge difference to feeling like you've got the kind of permission to sit down. 

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Flic Manning: Yeah, it's fantastic that obviously having the lanyard or any of those symbols can help in certain situations now. It's also interesting talking about some of the planning that you do too. I think a lot of people again that may be able-bodied, they don't have any experience of people around them potentially having an illness, a chronic illness, a disability, etc. They don't realize necessarily the amount of admin that you do just to get through the day, all those things that perhaps before you would have just adapted to on the fly now have to be pre-planned for ahead of time and so you're making phone calls, sending emails, doing all these additional things just to make sure that you can access a venue or get through safely or find your way to a seat.

So again, that's a wonderful thing that you've highlighted there. Such important tools that you have to use, but also again just giving that insight into what those extra additional things that you are having to do day-to-day. And obviously now you've already touched on that too, but travel is clearly something that you do love, you thoroughly enjoy doing that. So what are some of the barriers you faced when traveling with an invisible disability and what would make that experience more inclusive for others in a similar boat to you? 

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James Dunn: Yeah, look, I've always loved to travel. Unfortunately, approximately 25% of people with ME, CFS are either bed-bound or house-bound so I really consider myself incredibly lucky to be able to still travel, although I do it differently to the way I used to. As I mentioned earlier with the car park example, I think one of the biggest barriers people with a hidden disability face is that people often assume that someone is fine if there are no sort of outward signs of disability. I think this results in a lot of situations where people feel judged or challenged when trying to make their experience easier. In my case, that has resulted in me being reluctant sometimes to use that available seat or avoid long queues, which are really common when you're traveling through airports and other environments. I recently took a trip to an overseas trip and when I arrived at the airport in that country, they had a really long line for people at the customs processing.

They had a separate aisle, but it stayed that it was only for people with wheelchairs and the only people that I could see in that line were people in wheelchairs and everyone was really tired and irritable coming off this long overnight flight and I just didn't feel comfortable or feel like I had the permission to switch out of my lane to walk down the wheelchair line. So I actually ended up being in the line for over two hours and had to sit down and then get up every few minutes. But in the last section of the line, it wasn't possible to sit down at all. So that was a pretty challenging experience. I think in some airports as well, particularly smaller airports, you don't always have seating near the baggage carousel, so often sit on the ground there as well. And also sitting in lines waiting to get into events and that type of thing where there isn't any kind of ability to sort of go to the front of the line.

Although there is still more work to do, we have come a long way with accessibility for people in wheelchairs. But for many people who have trouble standing, I think more seating being available in any environment where there is a queue or need to wait for transport would make a huge difference to the commuting and travel experience of millions of people really. 

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Flic Manning: Yeah, exactly right. As someone who has lived both a corporate and now a volunteer life with disability, what are two changes you think would make a real impact in helping people with hidden disabilities feel seen and supported? 

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James Dunn: Yeah, I think there are both sort of cultural and societal, but also practical elements to this. I think we need to continue working on creating a culture of trust in the workplace rather than proof, a culture where we assume people have positive intentions. I personally have had positive experiences in the workplace, but I know that many people in corporate and work settings generally often hesitate to disclose their hidden disability for fear of judgment or possibly career limitations.

I think education is a key starting point and it's definitely happening in more workplaces across the country. I think we have significantly increased awareness of mental health in recent years, but I think we need to further educate leaders of organizations and their staff about other hidden disabilities like chronic illnesses, neurodiversity, and other challenges people face. This will really help, I think, to break down stereotypes and build that empathy. Having education sessions where people with lived experience, including from people within the organization, talk about the challenges that they face and how people can help them would be great. I think organizations also need to make sure that people feel safe to disclose or seek support without worrying about being judged. Although we want people to feel safe to disclose, that would be great. Disclosing is a very personal decision and I don't think people should be forced to show medical proof or other evidence for the disability as this can be a real barrier. I think regular well-being check-ins that are unrelated to performance are a really good way to build trust as well. I think employers should be asking the question of all their staff, what support do you need to help you do your best work? It's as simple as that. I think other minor adjustments to working arrangements and the workplace itself can make a huge positive difference to people with disabilities. Flexible hours, quiet spaces in the workplace, somewhere to lie down, those sorts of things. But it also benefits those people without disabilities. The positive impacts are significant. I think a statement of inclusivity at the start of team meetings, particularly longer meetings, helps to raise awareness that some people find meetings difficult. 

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Flic Manning: Brilliant answers and I agree with you across the board. I mean, disclosure, as you said, I don't believe everyone should have to prove that they have a condition. Also, there are a lot of people that it can take them decades to find a diagnosis if they're ever lucky enough to or have the financial access to be able to pursue that, but they're still living with a chronic condition or a disability. So, I think we also need to be aware that some people will never be able to provide proof of their condition, but that doesn't invalidate that they are living with one and that they need that support. But also, like you said, if we just asked what supports were needed for everybody and made that the standard across the board, I mean, the whole world would benefit, both able-bodied and disabled people alike. So, I think that's a brilliant answer and something that I hope any founders of businesses, CEOs, managing directors, whoever is in a position of potential power that might be listening to this episode today, go back, listen to that last bit that James spoke about before. There's just so much insight in there about how we can make the world much more accessible.

James, thank you so much for sharing your lived experience with us today and your insights. It's been incredibly helpful and we really appreciate your time. 

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James Dunn: Thanks, Flic. It's been great to chat with you.

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Flic Manning: Thank you for joining us for another Sunflower Conversation. Please keep the conversation going via our website, hdsunflower.com/au, on Facebook @HiddenDisabilitiesANZ, or on Instagram, @hiddendisabilities_ANZ