Deanna shares how she transforms her MRI scans into vibrant artwork, reframing her experience with Multiple Sclerosis. We explore her journey of managing chronic pain and endometriosis, advocating for mental health, and the importance of representation for invisible disabilities.
Connect with Deanna:
Instagram: https://www.instagram.com/circularblooms/
Deanna also mentioned
Honor Eastly https://www.instagram.com/honor_eastly/
Mean Baby by Selma Blair https://www.booktopia.com.au/mean-baby-selma-blair
Connect with Peta:
Instagram: @petahooke
Website: www.icantstandpodcast.com
Email: icantstandpodcast@gmail.com
Episode transcript:
Peta [00:00:03] Hello and welcome to The I Can't Stand Podcast the podcast answering your questions on what life is like when you have a disability. My name is Peta I have cerebral palsy and I'm your host. This week I have Deanna. Deanna lives with MS, endometriosis and other mental health challenges. We have a great conversation. In particular, I love her approach in and around her art. The way she interprets art through her disabled lens is just fascinating, and I highly encourage you. Go have a look at her Instagram. I'll link it in the description. But first, don't miss out on this fantastic conversation. So without any further ado, let's get into it.
Deanna [00:01:04] Oh, hi. Peta. Thank you for having me. My name is Deanna. I am living with multiple sclerosis and endometriosis and a few other chronic health quirks like the, spicy sads. That's, I call them, and, chronic pain. I am also a passionate advocate for mental health and disability rights. I work as a mental health social worker, and I also, I'm an aspiring artist online on my Instagram page.
Peta [00:01:29] So clearly we have a lot chalk that it's going to be a great conversation, I have no doubt. So first and foremost, MS. is a condition that can really affect your life. I mean, all conditions affect our lives. We know that whether they're obvious or hidden. But talk to me about the day that you got diagnosed with MS.
Deanna [00:01:50] So the day I was diagnosed with Ms.. or multiple sclerosis for people who might not know what that is. I was 17 years old. I was in my final year of high school, and, I woke up and I had, sudden vision loss in one eye. And when that happens with 17 year old, you, rushed to a doctor, to an ophthalmologist, and then quickly to a neurologist. They said it could be MS. They weren't sure. I had a round of steroids in the home. Within a month, I had another, attack, and I was having vertigo and falling over. They did an MRI when I had the first loss of vision, and they saw some lesions or some scar tissue in my brain. They do another MRI within a month that showed more lesions. I was diagnosed with M.S. within a month, which is a very quick turnaround. Unfortunately, the. That news was delivered to my mother over the phone, and, I was remember quite visually that I was wrapped around a toilet bowl because the vertigo was making me, vomit. And my mum came in and she thought I was dying, and so did I for a bit, because back then, I know people can't see me, but I don't feel this old. I actually have to ask Jeeves back. Then we dialled up and we asked James, and, he did me a mischief. He was very mean. And he told me very scary things about multiple sclerosis. And no one at the time really dispelled any of that. The representation I was given.
Peta [00:03:12] That's such a scary thing to go through. I mean, I say it quite a lot on this podcast, but there's no ideal time to be diagnosed with anything. But 17 is such a challenging time when you're just starting to feel like you know yourself and start to think about the direction of your life. How was. I mean, as you say, you had. A pretty negative, introduction of what disabled life could be. Did your doctors frame your MS in any other way, or was it complete tragedy and disaster in their eyes?
Deanna [00:03:50] So the specialist was quite cut and dry. He put me on immunosuppressants very quickly and he said, this is going to be your life from now on. I didn't really understand it at the time. I think I was definitely in shock. I was very sick at the time as well. Because of the diagnosis, I had a lot of, changes in my body. I had a different doctor, like a GP, that had sort of told me that I needed to withdraw from high school. That that was kind of over for me now, and that I really should reassess my life. I was lucky enough to find a really great GP, which I still see to this day. So I've been saying it like 18 years and he was very, very supportive. And he was very, strength based. He said if I wanted to finish high school, even if I was tanking or my, you know, year 12, which I did, he said, keep going. Like it's good to have, you know, peer support. And I feel that, at the time, the people telling me to withdraw or putting limitations on my life were very, in touch with reality. I feel like removing the, the social aspect of high school. My final year would have been extremely damaging to my mental health, which was already, pretty damaged at the time.
Peta [00:04:59] Not only that. Isolating. I mean, we all want to be around friends, or at least people. Being socially isolated is such a common thing for disabled people. So I'm really glad that you did pursue your high school. Is it all a blur that time? Can you remember that time?
Deanna [00:05:19] I do remember going back to high school, and people were afraid of me because I'd lost a lot of weight. The vertigo had been causing me to vomit. I was struggling to keep food down. I looked very. Ghostlike. I'm in. The people thought I was contagious and they ran away, which was, this is high school, I mean 17.. So, people, it was mean high school. People at high school can be very mean. I lost friends at the time because I wasn't as fun, like I couldn't come out. I was didn't want to sneek out and go to clubs because I was just too exhausted the fatigue was extreme. Even I got uninvited from schoolies. I think your audience is Australian mostly, but yeah, my, spring break where we want to call it for Americans. But yeah, they uninvited me to that, which was terrible because I wasn't any fun. I was always having to pace myself, and I think that is probably the biggest thing at that time, is just learning us as a 17 year old to pace yourself and have to go slow.
Peta [00:06:14] I'm just so sorry that that happened to you. Like, I'm not necessarily talking about the disability, but just people's reactions to your disability. Like, that's just awful. And certainly I know what it's like to not be invited to things because of your disability, whether it's, fully expressed in that way or just done, like, my high school reunion. I've never said this, but my high school reunion, my first year out of high school, they, actually, like, put the party in a place that was up a full flight of steps with no lift. And as somebody who I was the only one in in the school with a physical disability, so clearly I wasn't thought of or they didn't want me there. So I, I like fully can put myself in your position. And it's really difficult because so much of that part of your life when you're younger is around figuring out where you fit in socially, you know, starting to be attracted to people, whatever your sexual orientation is and when you're dealing with so much. Emotional turmoil. It's almost like you. Well, I certainly didn't have space for a lot of that mentally.
Deanna [00:07:29] Yeah. I think, the disability discrimination stigma that stuck with me as living with it as a person with an invisible illness as well to this day, that that was one of the bigger things that I had to experience and still experience throughout my life. Figuring out who I like dating, that kind of thing. That was fraught territory. When I was first coming into all that, I would disclose to partners and like, once again, a partner thought I had an STI that I was disclosing. MS as an STI, I think that's hilarious now, but at the time, I was horrified. I've had partners that I want to be with me because of my disability as well as so many other people, just like a lot of, what's the word, sanctions people try to put on your body so that I shouldn't have kids, that I shouldn't travel. Very recently, I parked in a disabled bay. I do have the disabled. The blue card. I need to go and toilet urgently. I had a woman. Nearly. I nearly bowled her over, but she blocked my path and demanded to know why I was parking disabled spot while I was trying to, like shimmy around her and run to the bathroom. I was so embarrassed. I nearly wet my pants in front of that lady because she kept she actually spread out her arms and was demanding to like ask me why. And I have to say I have Ms.. I have to scream at her and like run around. So I was about to have an accident.
Peta [00:08:46] And you don't have to see somebody's disability to know that they're disabled.
Deanna [00:08:50] Yeah, 100%. I agree with that. Most of my, chronic health conditions are invisible. So I also have endometriosis, depression, anxiety, chronic pain, which that's, you know, no fun.
Peta [00:09:06] So considering when you do look back at your younger self and how your disability was framed to you and how your future was framed to you, and putting all these, you know, limiting your potential and also putting low expectations on you like many disabled people experience. How would you of liked your future to be framed you now that you know your reality for you today?
Deanna [00:09:33] I think I definitely would have when I was first diagnosed, being offered some kind of psychological help just to, like I still say that getting MS or any kind of diagnosis or disability is it's a trauma. It's it was quite traumatic. So those two years post high school, I was so, so deeply depressed. Like the the very spicy side of depressed. I ended up going to see a different doctor just for routine health check. And she was very glamorous, very pretty and, very put together. And I always wanted to be a doctor when I was younger. But, you thought because of my high school results, just wasn't on the cards for me. So I was being all morose and telling her I can't have kids, I can't travel, I can't do this and that because I have MS. And, I remember looking up at me and going, well, what do you mean? I have MS.. And she was this, like, beautiful, glamorous, achieved doctor. And I was like, what? What do you mean? So she actually sat with me for nearly half an hour. She, like, pushed her clients back and she's like, ask me the questions you want. And she had travelled. She had a partner. I think she had kids. I can't actually remember, but, she was beautiful. And this is like positive representations for us. And after that, day, I actually went and applied for uni. So I went in our bridging program, and, I started just not letting it define me after that. But it was just that instance of meeting her. And that really changed the trajectory of my life.
Peta [00:10:56] So jumping forward to today and I'm really interested to hear, does your endometriosis impact your Ms. or vice versa? Do you really feel the fatigue?
Deanna [00:11:08] They're both inflammatory conditions. So I try to just like do anti-inflammatory things like a diet. And yeah, I try to minimise certain things in my life. Trying to keep up that exercise. But definitely the fatigue is one of the bigger symptoms that I get, just like debilitating fatigue. Try to get out of bed. Sometimes. And yeah, I was diagnosed with the endo ten years after the M.S., so when I was 27. And more recently found out I can't even pronounce it yet. I've got the other one that's in the uterus lining there. But, it's only a very recent thing that I found out. So going to be investigating that too. Joy.
Peta [00:11:55] And it's one of those things I was only speaking to a friend the other day that, as a disabled teenager, and I guess people just didn't realise that your disability impacts everything. And, like, sorry for anybody who's uncomfortable talking about periods, but it's it's, you know, part of many people's lives that your period does impact your disability and your, you know, disability does impact your period. It's just one of those things that I really hope that young disabled women and non-binary people have better support than maybe what we both did.
Deanna [00:12:36] Oh yeah, I hundred percent agree with you on that point. I had such lack of, knowledge around my periods when I was younger that. And sorry for the audience, I would go to school in, like, flood out the back of my skirt and get teased because I had such heavy, heavy periods and none of it was really investigated. It was just like, pop, you're on the pill. You'll be okay. But, I would say that the periods really do impact my fatigue, my moods, the pain or the pain or the joy of being a woman.
Peta [00:13:07] Talking about your chronic fatigue. Sorry, chronic pain and fatigue. What sort of strategies have you learnt over this period of your life to help manage that? I always like to hear different people strategies, because I always like to think that there's another thing out there that could maybe help myself and other people, so I'd be very keen to hear about it.
Deanna [00:13:29] So I definitely use a combination of strategies, sort of from a. You know, trial and error perspective. Like I said before, pacing myself is extremely crucial. If I over do it, it's going to be a really bad paint day the next day or fatigue day. I do try to practice mindfulness, which I know sounds a bit like but I do try. I struggle with that, but I do find that trying to get that calm like nervous system pattern down is really, really good for you. I journal. I make my art on my Circular Blooms page. So the art came out of just wanting to do something like repetition and making something ugly. Kind of pretty. Yeah. Sort of the inspiration behind that. So I find that quite, like, meditative, just to keep doing the art and putting, I put flowers around like medical imagery, images. And I also see a paint specialist, and I work really closely with my allied health team. So I use a lot of allied health services. So I see in osteopath I have I do hydro, I think what else I do that's so much, physio. that's just keeping everything in check I think. So that's definitely like a forever working project is my body.
Peta [00:14:39] I want to talk to you more about your art. You mentioned before, what inspired you to start in this area? And you spoke about it encompassing medical imagery. So obviously it has quite a deep meaning for you. I'd love to hear a bit more.
Deanna [00:14:56] Yeah. So, having Ms.. For 18 years, every year, or if it was, a period of relapse, I would have an MRI scan maybe once or twice every year. And if people know what MRI is, you know, scan the brain, you can see the lesions, which is scar tissue on the scan. Yeah, used to be really upsetting because I used to stare at it and I take it home, and back in the day I'd have an actual physical film, and I'd look at it and try to find all the little lesions and the dots. And then because I, bit overreaching, I'd try to Google which part of the brain might be affecting. I used to make me quite sad and obsessed with looking at them. So one day I thought, wouldn't it be nice if I used a MRI scan and put flowers around it and actually hid images inside the flowers, so like little hidden friends? And then potentially if I gave that to someone instead of them looking at what is potentially the sad part, which is the lesions, and you could try to find, you know, like almost like a Where's Waldo? So I did that for, I think I was in hospital at the time. It just came to me, I made one, I just do some basic photo editing software. It was my first go. That was beautiful and really colourful. I just popped it on my personal Instagram and, a lot of good feedback. So there was, Ms.. Plus, does the Ms.. Art show every year and I thought I might make one like a better one. So the Ms. show. Pop it in and see what happens. I didn't think anything would come of it. I won first prize in 2022 and they loved it. So that was great. So it's gone on to be printed on one of their thank you cards and was recently won again doing something a little bit different or this year's art show. And yeah, the response online was really incredible. So I that's why I started my Circular Bloom's like advocacy page, just like raising disability awareness and positive representation on that. So it's been a really fun journey.
Peta [00:16:49] Well. It is really beautiful. I'll be sure to link all your work in the description and people should go have a look. And I. I love that reframing and in you taking ownership of that, of all that that is and taking what many could see as a real challenge and not falling into the the hole that all of us can as far as the wonderland of disability, I think it's really fantastic, that is for sure. And I suppose it interconnected because I know that you're very, cognisant of managing your mental health, but you've recently become a mental health support worker. Talk to me about what inspired you to start that career.
Deanna [00:17:36] So when I was back in high school, I wanted to be a doctor. I realised quite quickly it probably wasn't going to be for me, all that, standing and all the academia. So I thought, I'll do psychology instead. So I studied, undergrad in psych, and then I went on to study a master's in sexual health and social work. But recently I've been working as a mental health social worker. I think that came about just from having a really strong sense of like social justice and wanting to help people in their mental health struggles. I have been volunteering for MS plus as an ambassador, so I would actually go out and talk to groups a few times. I've spoken to doctors, which has been really, rewarding to sort of get them to ask me any questions I might have about Ms.. And more recently, I've just, signed up and became a national advocate for MS Australia. And I'm sitting on the Lived Experience advisory panel, which will be looking, I think, at more policy. That's very new though, so I can't really talk much to that. But, really exciting things to be invited to do those as well.
Peta [00:18:40] Prior to this interview, we were chatting and I was, you know, trying to understand what were the best questions to ask you. But I have to say, I was interested because you mentioned a boundary that you maintain with your clients, and that is the fact that you don't actually mention your disability to them. I'd love to explore more of that. And what made you come to this decision in this boundary, and why do you maintain it today?
Deanna [00:19:07] So, I definitely maintain that boundary. As I work was working with youth. So that comes in to I was working with 12 to 25. I think it's important for me to maintain it as it ensures my therapeutic space remain centred on my clients needs and experiences without almost muddying maybe the therapeutic space with my own, health concerns. I think lived experience plays a really crucial, part in my work. So it gives me, like I said before, there was a radical empathy and understanding, and I can really understand clients who come to me with the more, broad issues like frustration, isolation, depression. And it's given me, I think, a lot of resilience. And like I said earlier, like, social justice framework to help build my clients up new strength based approach to help them achieve what they are coming into therapy to achieve.
Peta [00:19:59] You've lived a disabled life for quite a long time now, and, you know, you were so eloquent in describing what it was like for you in the early days. What is it like for you now? Do Have certain goals that you're aspiring towards, that maybe necessarily you were told at the beginning wouldn't be possible and you just like, stuff it. I'm going to do exactly what I want to do, and I'm not going to let my disability define me in any negative way, which I fully support. I would just love to hear how you've evolved as a person and sitting here today, who you hope to be in the future.
Deanna [00:20:41] Well, most of those things that people said to me when I was younger, you know, I've been to uni, I've done double master's degree, travelled a lot of places around the world. In 2022, 2022, sorry, I did a 100Km track for charity for MS. I just really like to think that my disability, that's not a limitation, but just a way that I experience the world now, there's so much more representation, which is great to see. Like, I love being on jump on if I'm feeling a bit low on my mental health a bit more spicy. I'd like to jump on to, social media and find things that are inspirational, like, you know, your podcast, other people are going through similar things and just have a good listen look at other people's experience and how they're sort of turning some, you know, not so great life stuff into stuff that's, you know, doesn't always have to be positive, not that toxic positivity, but, yeah, just people being like really resilient and just living life despite the curveballs again, keep getting thrown people's way. I also really love being positive, the disability community, because it's like the strength and solidarity that I find in that community, either offline, online is really amazing and powerful to be a part of as well, so I really love being a part of that.
Peta [00:21:53] And this is a question without notice. So I fully appreciate if you don't have an answer, but I would love to hear who you do look up to in the disability community, particularly for those who are listening to this podcast, who might have just got diagnosed or starting to come to terms with their disability. Who do you look to, when you feel like you need that extra support?
Deanna [00:22:19] Part of my MS I really struggle with like name recall, free association of thought. But I'm going to try my best. Selma Blair. She has Ms.. And her book Mean Baby was really inspirational to me talking about her struggles with Ms.. And I think our mental health stuff and a younger life and family. Honor Eastly is a person that I follow, they are Melbourne based mental health advocate and they did a, really amazing podcast called No Feeling Is Final. And I found that when I was having a lot of very, very bad mental health times.
Peta [00:22:58] Thank you so much for that, I appreciate it. As we've discussed in this podcast, mental health supports, are something that you're really passionate about. What are the areas that you'd like to see improvement? I mean, I know that's a huge question to ask, but specifically for those who have chronic illnesses or hidden disabilities, how can the mental health system, and allied health be better supports to that community?
Deanna [00:23:31] I think I'd like to see mental health services be more accessible, inclusive for people with chronic illnesses and also, sometimes more understanding of people with invisible illness. So I've definitely walked into, allied health professionals offices and experienced, disability discrimination or stigma because I look fine, especially when it comes to chronic pain, it took me a very, very long time to find a specialist that would talk me into that took me seriously. Which is really sad to say that everyone just said, go do yoga, lose some weight. Like, you know, when they were telling me that I was quite underweight, I felt. Even more like training and support around, like integrating mental health support services with chronic illness management. More support for the NDIS. Like I want to get into work, so I know it's a sticky situation at the moment with the new changes, but like I use the NDIS so it's been very helpful. Support groups as well, like Ms. plus does a lot of really cool support groups. But they are peer led, so it is been hard for me to find one that is, more of a younger generation. So like I said, I'm in my 30s. The groups I've been to, older people, which is fine, but it's just sometimes hard to, get sort of on that level, like these people, you know, had kids mortgaging houses, the next generation off by, like, many of us got even afford a house. Not sure if we want the kid yet. So we could try to have a peer group to talk about those sort of, issues. And, I think just more initiatives to just enhance awareness and understanding around what it is living like, what it sorry, what it is like living with chronic illness or disability.
Peta [00:25:12] What do you wish people better understood about your life living with chronic illnesses and disability?
Deanna [00:25:21] I guess that no one is going to experience Ms.. The way I experience I MS it is, known as a snowflake disease, that everyone is affected differently. Just what you're seeing on the outside isn't always what was reflected on the inside as well. Like someone could look completely fine and be really, really struggling emotionally or internally. I think just removing the pity aspect of having a disability, like when I tell people they are so sad for me, but I'm not at the moment sad for myself like I have grieved. There's been times of grief and coming to terms, but I'm not sad all the time.
Peta [00:26:01] Thank you for listening to this episode and thank you, Deanna for your time. I really appreciate it. If you missed last week's episode, I spoke to L.K. Bowen, a disabled author, speaking about how she used disability to build suspense in her thriller novel For Worse. Scroll back in your feed and go have a listen or share the show with a friend. Any way we can grow the podcast, I would really appreciate. Don't forget you can always follow me over on Instagram. My handle is @petahooke or you can send me an email. icantstandpodcast@gmail.com. Thanks again for listening. And until next week, have a good one guys. Bye. I would like to respectfully acknowledge the Wurundjeri people and Bunurong people of the Kulin Nation, of which I record the podcast today. And I pay my respects to both elders, past and present, along with and especially to those in the First Nations communities who are disabled themselves.
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