Why Non Visible Disabilities Matter

James Dunn 0:08

Episode where we will explore a variety of non-visible disabilities, the way in which people experience their disabilities, and discover the opportunities for society to make access and inclusion improvements that benefit everyone. Hi everyone, my name is James Dunn and I am your host. And like many of the guests on the Sunfire Conversations, I also live with disability, including myalgic encephalomyelitis, more commonly known as chronic fatigue syndrome, and postural orthostatic tachycardia syndrome.

Speaker 1 0:43

To catch through sunflower bloom.

New Mum Life Before Illness

James Dunn 1:28

Nicole Queenland, welcome to the show.

Nicole Quinlan 1:30

Thank you. Thanks. It's lovely to be here.

James Dunn 1:33

So take us back to 1995. You'd just become a new mum. What did your life look like then before you became unwell? And what were your hopes for your life at that time?

Nicole Quinlan 1:43

So back then, um, I just got my first job that felt like a grown-up job. I was working in a graphic design studio, really excited about becoming a mum and all those exciting things. Like nervous also, but like just really grateful with where my life was.

James Dunn 2:02

And that changed pretty quickly. So when did you first notice something wasn't right with your leg? And what did doctors initially think it was?

Nicole Quinlan 2:11

So I had quite a sort of traumatic, I would say, childbirth. It wasn't easy in by any means. And after having my son, uh a few hours later, a nurse offered to help shower me. Um and she was helping me and questioned what I'd done to myself. She noticed a lump on my leg and and was wondering what had happened. And that was sort of the first time I became aware of any physical lump. It definitely wasn't there previously, uh, prior to having my son. So after being discharged from the hospital, um, by the time I'd got home, it had grown so much that area of my leg actually had stretch marks in it. And I was unable to um I remember trying to bath him and sit back on my heels to bath him, and I couldn't do that because the lump had grown so big, it was stopping me. And it had a strange kind of, I would say, like a pins and needles kind of feel to it, and just didn't feel right. Um, but I wasn't concerned, but I did go to a GP just to make sure, you know, understand what it was.

James Dunn 3:24

And what were you told with that initial appointment and and subsequent people that you saw?

Nicole Quinlan 3:29

Yeah, so I saw my GP. Um, he told me that I had an advanced form of arthritis, which um, you know, now I know differently that people of all ages can get arthritis. But back then for me at 20 years old, and especially for it to instantly be advanced, I hadn't even started with arthritis. Um, it just never sat well with me, and it didn't feel right within myself that it was the correct diagnosis. So I probably went on to see another six or seven different GPs.

James Dunn 4:04

Wow.

Nicole Quinlan 4:05

Um, all telling me the same thing, asking me, have I um gone and seen anyone prior? I would give them the um diagnosis that I was told I've got advanced arthritis, um, and they would repeat the same thing back to me. It was uh eventually, like I said, probably about seven different GPs down the line and it growing. Um I got told by a GP that it was no medical concern, but he could understand um as a you know young 20-year-old that it it looked ugly and aesthetically he referred me to a plastic surgeon um who I was very lucky to um be referred to Professor Morrison um and he took the lump out for me. Um unbeknownst to me that lumps automatically get treated. Uh sorry, not treated, that lumps automatically get tested. Um so I wasn't thinking of anything further of a follow-up once that lump was removed.

James Dunn 5:08

Um how did it feel to know that something really wasn't right, but you're repeatedly told that you know it wasn't a medical concern?

Nicole Quinlan 5:18

Yeah, uh especially being younger, I think with age now, I definitely know to listen to that sort of quiet voice within yourself. If something doesn't feel right, it more than likely isn't. Um, but I was quite trusting back then, and I felt like it wasn't anything to be concerned of, like they were telling me, but I just didn't agree with the diagnosis. So I think it was lucky that they did tell me I had arthritis, in that if they had maybe said something to me that made sense in my brain, I probably wouldn't have done anything further. So it was an actual blessing um that they said that. And I just really grateful that I just listened to my intuition and just kept sort of following up till I got told something that made sense to me.

James Dunn 6:04

Yeah, that's good. I mean, we all do um have you know varying levels of trust, I guess, in medical practitioners, but normally it is pretty high, and certainly for me it is as well. Um but it's great that you're listening to that inner voice, which you're absolutely right. Everybody has as well, and I've certainly experienced that too when I've received answers to questions that don't seem quite right. So it's good that your intuition kicked in there. So can you tell us about the moment you were finally diagnosed with cancer and what was going through your mind when they when they said the cancer word?

Nicole Quinlan 6:39

Yeah, so um I'm sure it doesn't happen this way anymore because I technically wasn't a child, but um, like I said, I had quite a traumatic birth. I wasn't very well once I got discharged. So I had my grandmother staying with me, and my mum, obviously also a big help, helping me with this newborn that I had. And back then we had landlines and the phone rang. My grandmother answered it, and she burst into tears. And I she wouldn't tell me why. And the next minute my mum comes home from work, and my whole my whole family is around and everybody's crying and nobody telling me what's going on. Sorry, I'll get upset. Um That's okay. Yeah, but um, sorry. God, I've got like PTSD for this.

James Dunn 7:27

Um understandably.

Nicole Quinlan 7:30

But my grandma being a nurse, she understood what the receptionist was was telling her, which was that I immediately needed to come back in um because I had synovial sarcoma. But because it was going into the I can still remember it was a weekend, that whole weekend, everyone different family members were coming over and everyone was really upset and crying. And they had the receptionist had advised my grandma to not let me know because I wasn't very well at the time anyway, and they didn't want me to go into shop, but I would be told on the Monday. So I was quite confused, but um went in on the Monday um back to meet with Professor Morrison, and yeah, he let me know, and I was just absolutely shocked. Like that was even a thought that came into my head. Um, and was told that I'd be having another surgery the following day, and that started, yeah, my I guess my course of treatments and journey. Um, but it was uh definitely shocking.

James Dunn 8:35

Absolutely. It was it was obviously incredibly sudden and your life changed overnight, so I can see why he'd be really shocked with that. As a a young mum with a newborn, what was your sort of first fears there when you were told?

Nicole Quinlan 8:51

Yeah, um well, in that first meeting when I got my diagnosis, I instantly asked, you know, the natural thing was like, Am I gonna die? And I can still remember they gave me a prognosis for uh of about six months. So that was um sorry, obviously still traumatic. Um but yeah, this I think being naive and young was was my best medicine because never once did I feel that. Again, with being told I had advanced arthritis, it didn't sit right. Being told that I'm gonna possibly pass away within the next six six months never felt right either, and I just didn't believe that either. Um so I think that is why I'm here because my mindset and my mind at the time was yeah, I wasn't going anywhere. How can I just leave this baby that's just come into the world and he not even get to know me?

James Dunn 9:51

So yeah, absolutely. So having your young son was obviously a huge positive in itself, but helped you also with processing diagnosis. And who else was around you to help and support you with that initial diagnosis in those first few weeks?

Nicole Quinlan 10:05

Yeah, so I mean it my parents, my you know, back then I did have all my grandparents, um just immediate family. I found friends, definitely disappeared. It was almost like I was contagious. And I understand now I didn't then, but I think sometimes when people don't know what to say, they don't say anything. Yeah, which can be quite damaging. You'd rather have an uncomfortable or awkward conversation rather than silence, because yeah, I felt very abandoned because not only being a new mum when everyone's sort of of that age traveling and all the exciting things are starting to happen, and my life looked different from that perspective. But also to get such a diagnosis, a lot of people, yeah, just in the friend in friends uh stayed away because in retrospect, I just guess they didn't know how to handle it and didn't know what to say to me.

James Dunn 10:59

Yeah, and that's a really common sort of thing that I hear in talking to people's friends and family distancing themselves because they don't know what to say. And I think they're coming from a good place because they don't want to upset you. But as you say, the reality is that it makes it harder for you. And I think over time talking about things is becoming more common in our society, which is a good thing, but yeah, thirty years ago people sort of keeping to themselves and not wanting to raise difficult topics like that. What treatment options were presented to you in the beginning and what did doctors tell you about the the risks of those treatment options?

Nicole Quinlan 11:37

My first option was to amputate my leg. Um because of how aggressive the cancer was, um, that was put to me um and I refused, which sounds really dumb. But as a 20-year-old um and having a new baby, I didn't know how life would function, you know, as an amputee. So um that was rejected. So um I ended up having uh radiation treatment, but quite aggressive in the fact that I honestly can't remember, but say uh the standard um dosage might have been four weeks worth of radiation. I got the double, so I would have had whatever the weeks I can't remember now, um double that, which was hugely painful. Um, the radiation ended up uh sort of leading me to a burns ward that sort of my whole leg had to be bandaged, like the muscles and everything had dropped off like uh third degree burns, and it was a really painful um experience, but also I guess why I'm here, so I can't complain in that regard. But yeah, again, being young, you just trust and do, and yeah, sort of now, um like I've mentioned to you, James, reflecting on it, that yeah, reflecting on the ordeal that I went through is probably more traumatic for me now as an adult thinking about it than being present in it. I think you just focused on getting well that I didn't really deal with all the noise. I just saw the finish line.

James Dunn 13:17

Yeah, which obviously was a benefit to trying to manage that physically and and emotionally to just plow on. It sounds like the fact that you were young and had a newborn baby did affect how you weighed up the risks of having your leg amputated in your future. And when you think about that 20-year-old version of yourself making that decision not to amputate, do you have compassion for the choice you made with the information and perspective that you had at the time?

Nicole Quinlan 13:42

Yeah, like I think um I'm I'm proud. I'm just glad it worked out for me. I think if, you know, as an older person, well not older person, but like at my age now, if I was to get the same diagnosis, I would say do whatever's needed. Um so I'm just grateful that it all worked out. Um I actually found out probably about 10 years after going through this that my mum actually told me that when I was in surgery um getting that follow-up uh operation, they had gone to her and let her know that I'd refused signing to be amputated, um, and had told her that she could sign on my behalf and had pressured her to amputate, which was shocking to me because you know, I was an adult and to put that decision on my mum, um, especially if she had have agreed to, and she did tell me she did sign it, but they told her they would try and do everything to make sure it didn't end up that. But um I think you know that's devastat was really devastated me that I possibly could have woken up and you know the possible um damage that could have caused to my relationship with my mum.

James Dunn 15:04

Yeah, absolutely. I'm glad that they honored that your decision and your right to to choose the treatment you did. And obviously it was the right decision for you at the time and has has proven to be that. Nicole, you mentioned that the specialist said you only had six months to live. Obviously, that didn't happen. What did they say about why the treatment worked so well?

Nicole Quinlan 15:24

Um I was very lucky. Um I was getting my treatment at Peter Mac, and I think um a lot of the team took a real soft spot to me. I was a new mum. I used to go in with my son to my appointments, and um I remember there would be a shield that needed to be made up to protect the rest of my um good part of my leg that they didn't want the radiation to enter. And you know, my understanding for the most part, that shield sat with you for your radiation journey, where they were so um good to me that I would just have these new shields made up all the time to make sure they were specifically right. Um I actually turned 21 during my treatment, and um I've still got the photo and my appointment card where they covered it in stickers and had a big big bunch of daffodil get upset. Sorry. Yeah, it was so good. Like um, I've got strange to say, I've got such good memories of having radiation. Um but they had a cake for me and yeah, just made my day memorable.

James Dunn 16:38

Well, it sounds like being in that environment, you did see the best of people. You had the nurses and other people really caring about you at a time that was so difficult for you. So I can I see why you you do look on that experience positively.

Nicole Quinlan 16:51

Yeah, and tying into the sunflower, like just kindness goes so far. I don't think people who even uh providing that kindness realize the impact to the recipient of the kindness, if that makes any sense. Like, you know, still cheering up about stickers on my card 31 years later.

James Dunn 17:09

Like, yeah, it saves what your typical 21st, but uh no one that you'll obviously remember forever and being surrounded by great people.

Nicole Quinlan 17:18

Correct. I did everything medically that was asked of me. Um, you know, like I mentioned, I agreed to more than the usual amount of radiation. I um did all the physio, all the surgeries needed. Um I stayed a patient of Peter Mac following my surgery. I think for 10 years, I did like I think five is the normal, but just for my own peace of mind, I used to go back once a year just for my scans and checkup just to make sure everything was good until I something in my head I thought once I get to 10, I'll feel good about it. And um, I don't know why I'm still here. I'm just so grateful that I am. Um, I don't know if it was only um I guess the surgery and medical side. I really think your mindset is the most powerful drug. Um, I remember getting my radiation treatment, and they used to get me to bring back then, you know, you'd bring your CDs in um because sort of MRI machines and radiation, it's a lot of laying around, and I'd listen to my music and just repeat in my head, you're not dying, you're not dying, you're not dying. Um, or sort of like before I really knew what a mantra was, I was doing these little mantras and and continual thought cycles in my head, which I also think is very much um why I'm here. Combined with early diagnosis, especially with cancer of acting on it as soon as I saw, you know, I was lucky in that I had a visual indicator, you know, um very different when it's something like internal. And you might, you know, my mum's best friend had a brain tumor and she ended up passing because um her headaches were told that she needed to get different glasses, you know. So I was lucky in that I had a visual lump um and acted on it immediately. Um, even though it took a while to get there, it was still, you know, I wasn't, you know, months and months and months into that lump growing.

James Dunn 19:24

So it sounds like a combination of you doing absolutely everything that was asked of you, that going well, your mindset, and also a big dose of luck.

Nicole Quinlan 19:33

Incredible amount of luck, yeah.

Surgeries Rehab And Learning To Walk

James Dunn 19:52

So what was the treatment process like as it went on? You mentioned that you had the burns initially. What did it look like over the the following sort of weeks and months?

Nicole Quinlan 20:03

Yeah, it was a really slow journey. Being my leg, I spent time in and out of a wheelchair. Um a lot of my muscles that the tumour was wrapped around were removed. So when they stitched everything back up, my leg no longer touched the ground. So that took follow-up surgeries to lengthen the muscles again for me. Um spent a fair bit of time in rehab learning how to walk. Uh and yeah, those kind of follow-up things, lots of physio and everything, um to get that strength back.

James Dunn 20:39

That must have been very difficult in itself, but also with your young son not having full functionality. You had support from family to help there.

Nicole Quinlan 20:47

Yeah, forever grateful. Um I used to s get like a um long my bathrobe tie that I took off my bathrobe, and I used to sit in the wheelchair and tie him with the bathrobe around the wheelchair and to myself and get myself like wheel around that way. But um I definitely didn't trust myself in his younger years, uh not younger years, younger months, um, to carry him. I was if I wasn't in the wheelchair, I was definitely on crutches.

Living With Lymphedema Long Term

James Dunn 21:18

So that must be incredibly tough for you. When did you first realize you had developed lymphedema? And for those who are not aware of the condition like me, how would you describe it? And what do you think is the biggest misconception people have about it?

Nicole Quinlan 21:31

Maybe it was explained to me that that would possibly be a side effect of the radiation, but it's not something I recall. I just remember um physically noticing the difference with my leg, um, lymphedema, although for the person who has it, is very painful at times and um quite stressful, but it's more a visual in that during the radiation treatment, my lymphatic or my lymph nodes were killed and they don't rejuvenate, and there's no surgery that can help. So um, any fluids, especially for for standing for long periods or heat um or even you know anything I could be sitting all day and I and my leg swells far more noticeable to what my what I call my good leg looks like so it's a very visual indicator but it is quite painful especially on bad days it literally feels like your leg is gonna or whatever part of the body it may sit in um is gonna tear apart um that pressure buildup of fluid you can imagine it it it gets quite sore and yeah absolutely yeah it's quite um from what I understand it's a condition brought on you know mainly from cancer treatments but you know all different sites of uh different types of trauma that could happen to a person's body.

James Dunn 22:55

And are there any misconceptions people have or is it just not all known so people don't really have a conception?

Nicole Quinlan 23:01

Yeah I don't I don't know about misconceptions. I think people still do and always have will just stop and ask me, oh my God, like what have you done to your leg? And it's a because it's so visual. Um but I think like you mentioned I don't think people understand what it is or what's occurring to that person's body. Um I probably wouldn't know about it either if I didn't have it.

James Dunn 23:29

And what do your more difficult days look like now? Like what are those key symptoms when you're having a really tough day?

Nicole Quinlan 23:35

Getting older I'm noticing like most people who have any sort of health conditions or injuries age definitely um you start to notice a bit more that uh I didn't need to look after it as much as I do now. Something I didn't mention part of the radiation treatment that I was told uh those 30 years ago was that because the tumor sat directly behind my knee, there'd be a time in my life that I would need a knee replacement as well because my knee would have been damaged. And that happened two years ago. So between the lymphedema and the knee replacement um yeah it's just a matter of me taking more care of myself and putting that effort in not just age relying on my age to support me through it. There's things that can help as far as compression bandages and such they make a small difference um but not a huge difference to completely take it away.

James Dunn 24:36

Is the pain fairly constant or does it fluctuate?

Nicole Quinlan 24:39

Pretty constant I think like most people with any condition you just learn to live with it. I don't know life any other way I notice the bad days much more but it's always there.

James Dunn 24:49

Has medical care for lymphedema improved over the last 30 years since you were diagnosed?

Nicole Quinlan 24:55

Yeah I would think so there there is like here in Melbourne there's a lymphedema clinic um there is you know uh little things we can do to make life better whether it be um lymphatic massage elevation's a big key that's something that's easily done that I will do you know laying with my legs up on the wall um that manual kind of drainage you know uh the compression bandages that I've mentioned or the compression socks um I think it's all just about little things to make life easier knowing it's never going to go away but there's definitely things um that anyone who has it can do to make daily life a bit more bearable.

James Dunn 25:37

And I guess over time you would discover more and more little things that that have a positive impact.

Nicole Quinlan 25:41

Correct.

James Dunn 25:42

You add them to your your toolkit.

Nicole Quinlan 25:44

Yeah.

James Dunn 25:45

So what advice would you give someone who's just been diagnosed with lymphedema about how to process that and and look ahead in life?

Nicole Quinlan 25:54

Yeah I would definitely um suggest to not panic um it's a livable condition and that there's support groups there's a lot of information now um a lot of uh I guess I'm not part of but like online support groups. I'm often reading and trying to look for um if there's any kind of new things because things are always changing as far as um like I mentioned to make days easier and I would just tell anyone just look after your body and respect it and and be kind and be patient and Yeah, you'll be okay.

James Dunn 26:33

Good tips. How have your health challenges changed the way you see yourself and your perspective on life?

Mindset Kindness And Living Now

Nicole Quinlan 26:35

I always say to people now and I know I'm a like one of the lucky ones that made it through cancer but it honestly was the best thing that I've experienced in that it's sort of given me an outlook on life that I think people that don't face death I mean we're all gonna die we know that but to actually be told out of your control you this could potentially be your finish line and um I'm someone who very much lives in the moment. I'm you know uh make decisions straight away I don't think and hesitate I try and live life I um you know I'm now married but I was often um a solo traveler around the world and people used to say all the time to me oh my god how do you like go travel by yourself like so many people get nervous about this um you know doing things on your own or that and that just makes no sense in my mind I'm like tomorrow's not promise like live now and I find a lot of people put off and save for the right time or do this for when it feels right and there's no right time like now and that's the gift that cancer gave me of that sort of perspective and outlook on life that I'm very much in the moment which you know may be looked at as a negative as well but I've had so many amazing um experiences post-cancer in you know traveling and different things that I've done purely because of the gift that cancer gave me and just just do it.

James Dunn 28:18

So just do it I like that the the Nike mantra is yeah I just didn't realise but yeah no it sounds great. You've got that really positive outlook and you know grabbing life you know with with both hands. Yeah and and probably doing things that you hadn't before which is great.

Nicole Quinlan 28:34

I think for any of us at any moment we can get one of those kind of phone similar phone calls and you know you're not thinking about oh I've got this much money in the bank or this or that. You know for me I've got so many even if it was to end tomorrow I've created like every day's been a blessing since that day I sat in the office and found out that news that I've got a lifetime of memories that you know from that moment on I you know really wanted to experience and embrace life. So a big blessing to um yeah be told that I possibly wasn't going to be here much longer.

The Sunflower And Making Access Easier

James Dunn 29:11

So when did you first discover the sunflower and what do you like about the initiative?

Nicole Quinlan 29:16

I was working in a shopping center in center management in Melbourne and we had a customer that was quite upset that we weren't sunflower friendly and I didn't know what that meant. So I Googled and then I asked the question to our team after understanding what the sunflower was to why aren't we sunflower friendly. And um from there I was lucky enough that we brought it into the center I was at and um continually pushing through um being part of the disability EAG um eventually we rolled it out across all the shopping centre assets across Australia um which I'm very proud of and they're still current members and I just love everything about the sunflower I just you know would have loved to have been around when I needed it. I often used to get followed and abused using disability parking bays um back then and you know genuine fear like you know as a a young per younger person with a baby being followed especially a lot of the time uh by men um being told I shouldn't be parking somewhere um yeah it was quite frightening so I'm so happy for people that the sunflower exists now and hopefully that takes a bit of that fear away and gives them sort of the power to know that they're deserving of using those spaces or those bathrooms or whatever it might be. Um and the thing I love most is that silent conversation the sunflower has um you know I have mentioned earlier again that I still get asked by complete strangers what's wrong with my leg. Um and I love that the sunflower is a whole conversation without a conversation.

James Dunn 31:17

Yeah I totally agree I think that's one of its great strengths is the conversations that it starts verbally but also unspoken where people just understand that you may need some extra time help. And the disability park example is a really good one because not only do you feel more empowered to park there but it also helps the people who may otherwise have challenged you some of those people but most of them I would say will be more accommodating knowing that there is a need there. So what do you do in your role as member engagement coordinator in the Sunflower team?

Nicole Quinlan 31:52

So I'm lucky in that I get to continue working with companies that have joined the Sunflower um and supporting them in whatever way I best can. And I just love you know meeting with the different members and hearing about their journey and I think the um impactful thing for myself having been with a company that did become sunflower friendly and I've been on the other side and gone through that journey and all these amazing things that I experienced firsthand not only um the positive impact to the customer but um something that I wasn't anticipating was the impact it had internally with colleagues that I then started sharing a bit more about myself and vice versa people shared with me and all this beautiful organic um rollout that happened and now I get to meet with members and here they're having the same experiences really makes me happy.

James Dunn 32:56

That's great. And you're absolutely right it's been great to see that evolution of the sunflower from one where most organisations who are sunflower members had a a strong public facing element to their business like the airports, the transport. But now we're getting so many members joining primarily for their workplace if they don't have a a big customer facing part of their business because it's just creating really inclusive environments people becoming really comfortable being in their environments starting those actual conversations or the silent conversations as you said which has been a great evolution of the the sunflower concept.

Practical Inclusion And Final Ask

James Dunn 33:32

So in addition to the sunflower how can we raise awareness about non-visible disabilities and how much support people with non-visible disabilities need I think all through conversations I think once an organisation puts that message out to their team that they are sunflower friendly, those conversations naturally start and with um the sunflower website there's so many resources on there.

Nicole Quinlan 33:57

We've got the Invisible Disability index um that offers so much insight so companies will find that when they do become members conversations start happening that if a team member does disclose something the start of that conversation can work towards how can we support you? Whether it be um providing a stand up desk or um allowing that person to take extra breaks, whatever it might be, it starts with just a conversation.

James Dunn 34:28

So always our final question in addition to those examples you've already provided what is one small change that individuals or organisations could make tomorrow to improve the lives of people with lymphedema or any other life-changing non-visible illness?

Nicole Quinlan 34:42

It sounds obvious but I would say just don't jump to conclusions or judge. Have a conversation and just you know what the sunflower is is just be kind.

James Dunn 34:55

Great. Thank you so much for coming on the show today, Nicole I know you've not spoken about this a lot publicly so I speak on behalf of our whole podcast community and thanking you for your courage to share your story with us today. I'm sure your story will resonate with a lot of listeners, particularly those who have experienced cancer or lymphedema. And thank you for the amazing work that you and the team do at the Hidden Disability Sunflower. It really is making a big difference to the lives of so many people. Thank you very much James thank you for joining us for another Sunflower conversation. Please keep the conversation going via our website hdsunflower.com forward slash AU on Facebook at hidden disabilitiesanz on Instagram at hidden disabilities underscoreanz and on LinkedIn at hidden disabilitiesunflower-Australia and New Zealand. You can also visit our website if your organisation or an organisation you know is interested in becoming a Sunflower member. If you'd like to submit a question for one of our guests to answer on a future episode please direct message us on socials or email us at hds events at Baileyhouse that's B A Y L E Y H O U S E dot org.au Please help, have patience, show kindness to others, and join us again soon, making the invisible visible with the Hidden Disability Sunflower