Chronic Illness and Disability Advocate - Tessa Deak

This is a transcript of the episode. The full episode can be heard here.


I would like to show my respect and acknowledge the Traditional Custodians of the lands, on which these recordings take place. I would like to respectfully acknowledge the Wangal people who are the Traditional Custodians of the land on which I live and work.


Hi, I'm Prema, the host of this podcast - What Can We Do?

I started this podcast in 2019 because I was feeling overwhelmed and anxious

about issues affecting communities. There's so much going on in this world.

So much to address, so much to fix. Where’s the best place to start?


In each episode, I speak to someone or an organisation that's making impact. You will learn about the issue, why it exists the challenges, but most importantly how you can be a part of the solution. My hope is that you can take away two to three tips each episode that will support you in your helping journey.



And today I have with me, Tessa Deak.


I'm Tessa Deak. My pronouns are she/her. I guess in a nutshell, I'm a chronic illness and disability advocate in my local area. Yeah, use my lived experience to try and make some change in in the region.


You run a Facebook group. The Chronic Illness Support Limestone Coast. So how did that come about?


That started back in 2018. I have the chronic illness called ME and it's also known

as chronic fatigue syndrome. But I call it by ME, which stands for myalgic encephalomyelitis. My mom and I hosted an ME awareness night. And after our awareness night and while planning our awareness night, we realised that there wasn't

a huge amount of ways to get connected in with people who might actually understand what chronic illness is like and who, you know, just understand. And they get it because

they also experience it.

So then we well, after that, I started the Chronic Illness Support Limestone Coast which was originally just a Facebook group where people could come in for mutual support and understanding. And we could also share different products and services and all sorts of things in the region that actually help us manage our conditions.

And, yeah, just have a space where I guess you could be with people who got it.


So prior to that group being formed what sort of community support did you kind of have access to?


Not a huge amount. Maybe I just wasn't aware of what was around, but I didn't find

a lot in the area, or at least just the type that I was looking for. So the support probably

came more from family and friends, but not all family and friends necessarily knew what it was like to live with a chronic condition. Meeting those people who actually did

understand what that was like because they lived with it made a big difference.


When you started the group, did you immediately get a response?

TESSAI think it was a bit of a slow build because it I guess it depended how visible it was. It is, yeah. If people don't see it, then it's hard to join, whereas if they do see it, then. Yeah, but it's also a very specific part of the community. So I guess you have to really kind

of target that visibility. And yeah, so we've got over 120 members at the moment. And yeah, that has just been a bit of a slow build for a while.


How long have you been running the group now?


Since 2018.


And through this pandemic, has the relevance of that group changed? Has it become stronger?


That's a really good question. I think the relevance has been the same, but the I guess the need for it in a way has been a little bit different, because for a lot of people, we really needed to connect in with people like a lot of people felt very isolated.

But for people with chronic illnesses, sometimes that was actually almost normal for us.

We're people who, I guess, found quarantine quite normal and was something that we had actually been used to for quite a while. When when Covid happened, it was actually really nice to see how many things came about that actually made our lives that little bit easier, because then it was something that a lot of people were experiencing that they never had before. So in a way, the need was there and it was definitely prevalent.

But there was a lot that came out of it that actually really helped us as well. I guess the use of virtual meetings is probably one of the easiest to say, because, you know, even for myself, there are a lot of meetings that I might have had to really push myself to get to in person, or maybe I was just too exhausted to be able to do it on that day.


So, Tessa, could you tell us how you got started in your advocacy work?


When I was younger, I always really enjoyed volunteering wherever I could. I did, you know, different bits and pieces throughout the years, but it wasn't very focused. It was just whatever might be around that needed some help or that I could get involved in.

And that was really fun.

But then when I started to get sick, I wasn't able to access that kind of stuff as as easily

or I just wasn't very helpful, especially if they wanted movers and shakers and I couldn't

move or shake. That wasn't very helpful.

I had to leave school because I just couldn't complete Year 12. It wasn't very healthy for me. And the stress was making my condition worse so we had to call that quits pretty early, which was quite devastating for me. But it was a really good decision.

And when that happened, I pretty much had to start my life from scratch, which helped me massively understand my condition, because I basically had nothing going on and nowhere to be.

I was able to add little bits and pieces in so I could understand my limitations and what triggered me and how to manage it way better than I had before. And then my mom suggested that we hosted the ME awareness night, which was not something that I was that keen on, but it was one of the best decisions ever.

And I'm very glad I have someone like her to push me out of my comfort zone.

So we hosted that and I gave a speech and we played the movie Unrest, which is about

someone who experiences chronic illness. Well, my condition.

And so then that helped me a lot actually, as well, in understanding it but helped my friends and family and other public members understand chronic illnesses so much better. And yeah that first step is definitely what spiralled me into doing different advocacy, because I found that experience very empowering. And that's what started

the Chronic Illness Support Limestone Coast after that.

And then we started the Wellness and Wellbeing Festival after that. And then all these different opportunities just kind of slowly came from those different things.

And that's how I got to the position that I'm in today.


Has the level of awareness about chronic illness changed in the course of your advocacy work?


Yeah, I definitely do think it's getting better. And it's fun being part of that changes as well, but going into trainings and things and seeing the difference it makes with people's mindsets from when they walk into when they walk out and those kind of things

is really fascinating. In the community, maybe you don't feel it quite as strongly, because

in the community it's still very open with a huge amount of different people. So it can depend on the space that you're in.

But I can definitely see the direction it's going, and it's a positive direction.


People often rely on stereotypes when they have a lack of knowledge. What sort of information could you direct them to do better educate themselves?


I think using people who with lived experience goes a long way because it gives insight into what people actually experience rather than just making assumptions, because that can get us into a lot of trouble.

But when we use lived experience, we actually see all sorts of different things. So that could be following people on social media who are advocates. It could be looking at really good disability representation in the media. That could potentially be ABC, because I think they have some really great media representation in there. It could be consulting properly and codesigning with people who actually live with whatever it is

that you might be trying to improve on. Like if you're looking at building a new building,

then using people with lived experience to actually help guide you. In a way that makes it more accessible for everyone else and that can inform you, inform you about how important codesign I mean, universal design is and all sorts of thing.

And using really good resources like places like Purple Orange and places like that who

highly value a lived experience and help that guide them in the work that they do.


What kind of challenges do you face in the advocacy work that you do and in raising awareness?


I think that there are few different barriers, some of them would probably be the attitudinal barriers because you are trying to educate people. And some, like I've had really excellent experiences in that. But at the same time. If people don't have their mind open to a growth set then they're not going to take in what you're saying, so sometimes that can be a little bit of a barrier and trying to find the right way to engage

with people and get through to people.

But yeah as far as the majority goes, I've had quite good experiences.

Something that can also be difficult is what you are often doing in sharing lived experience is talking about things that are good and bad. And sometimes the bad

can be hard to talk about because a lot of the time they are your quite negative experiences. Whether that might be a little bit traumatic or just it was uncomfortable or a little bit embarrassing or whatever it might be, those kind of things can sometimes be hard to talk about or emotionally draining.

So sometimes that's difficult. But at the same time, I think it's very worthwhile and I still thoroughly enjoy it.


I feel that the labour of opening people's minds up and educating them always falls to the person who is often marginalized because of the views that they are trying to change. Do you think that's getting better?


Yeah, I think so. I think people are realizing that it's not just up to us. And so the more we spread that message, the more people realize that it is their responsibility. And as a society, it's our responsibility to educate ourselves rather than always rely on particular groups to educate us instead. And you know, we shouldn't be putting the accountability back on them.


What do you love about the work that you do?


Something that's so fun is getting to see the change and how sharing a story about

or just explaining what my life is like can make such a huge difference in the way

someone else views the world even. It's just something that they hadn't really thought

before or seen very much of before, so then their mind gets open to it. And once they start then seeing it, they start seeing it everywhere.

And then they'll come up to you a month later and be like, oh so since then, I started noticing this and this, and I want to make this change. And that kind of feedback is so exciting.

But being able to be a part of that change is something that I just really love.

It gets a bit intoxicating.


That's nice that you feel that drive, because I imagine it's not always easy taking that role of the person to educate and raise awareness. You do advocacy work. You do work with head space and you also do disability and inclusion training in workspaces and office environments.


So that work was with Purple Orange. I was hired as a training facilitator, and we would go to different facilities. It was at that stage mostly councils and community services, and we would teach the adults about what disability is, how they can be more inclusive,

how to be more accessible. What are some things that you might not have realised or thought of before?

And yes, those those kind of instances are definitely where you see a big change in from when you step into the room versus when you leave, even though it might only be a couple of hours.

You can just see the shift because it's really interesting.


So you do a lot. You have a full plate. What else are you looking to do in the future?


Great question.

I think I want to continue doing what I'm doing. It's probably a good idea to focus it

a little bit, because at the moment I do lots of different things in lots of different areas.

And even though it sounds like a lot for me, it's small things. There's just quite a few of them.

So I'm still able to manage my condition around it, because for me, my base level is having rest days, and then I add in little activities throughout rather than for most people, their baseline is work and then they put in their rest days in in there. So I'm kind of the opposite. But yeah, I think if I could focus in on something, then it would probably make a big difference.

But I guess the past couple years of being made, figuring out what I'm able to do, what I could get hired to do, what am I super interested in. And you know what opportunities are around? And then just trying to make the most of it and make change where I can.

So then and then I've got to this stage where I've got lots of different things. And now I just need to go, OK, what is my biggest, biggest focus?

And then try and hone in on that a little bit more.


What's your advice or tips that you might have for someone who might want to make a difference the same way you are through advocacy or raising awareness about a particular issue that they are encountering?


Wow that's a big question.

Take the first step. What what could that look like? It could be a number of different things. Maybe you just start to become more open about your experiences with people instead of maybe someone who masks a lot about how you're feeling and tries to, you know, act as if everything is cool and maybe you just start talking up a little bit more.

Or maybe that's just in person with your friends and family. Maybe that's in the community or on social media. It could be a number of different ways.

Or maybe it's taking a step in an organization that does advocacy and becoming a volunteer or an employee or, you know, join a codesign group. Yeah. There are so many different things that you could do.

And I think it really depends on what the person is interested in and what they're comfortable with. But I think just making those small little steps can still put you in a direction that you never expected.

Because of my little awareness night a few years ago has spiralled me into a place that I never expected to be in.

But it's just, you know, taking that little step in the direction.

And I never wanted to do the awareness night either. My mum was very, very strong

and pushing me along to do it. And I was very nervous. I didn't want to make a speech.

And she made me make a speech. And I'm so grateful for it, because now I do that as as my job. And I love it. So, you know, just those little little steps can really open you up if you're ready to.


Is it scary when you put yourself out there?


Yes. I want to say no, but yeah, but it gets easier because the other thing is sometimes we get scared of being scared. Whereas when nervous or being a little bit

anxious becomes normal then it doesn't actually feel scary. Like I get nervous

before I talk all the time. But I don't even notice it anymore because it's something

that is just a bit normal. And I always know that I'm going to come out of it.

So it's something where maybe I'll still feel some butterflies or my heart might go up

when I start something, but at the same time, I mentally know it's going to go away.

I know that I'll get through it and it's just going to be another day.

And that actually is very comforting, because then even when I get nervous, I'm still like, eh it's just a bit of nerves, we'll be fine. I think getting to that stage, it doesn't happen overnight, but if it does happen.

So even if you're scared, you just have to remember that that's just your body saying,

oh, we're in danger and reminding yourself that you're actually not in danger.

It's OK to be nervous, but you're not in any danger.

And just have a go, you will be OK. And people will love and support you no matter what.


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