Title:
Jess Gregory: Using Poetry to Heal From Medical Gaslighting

Subtitle:
How Jess Gregory Turned Her Struggles with Ehlers Danlos Syndrome into Powerful Poetry and Patient Advocacy

Transcript:

Alycia Anderson: Welcome to pushing forward with Alycia, a – that gives disability a voice each week. We will explore topics like confidence, ambition, resilience, and finding success against all odds. We are creating a collective community that believes that all things are possible for all people. Open hearts, clear paths. Let’s go.

Welcome back to Pushing Forward with Alycia. I’m Alycia Anderson. We have a poet in the house today. I’m so excited. Jess Gregory is a poet and a patient advocate from Australia living in Belgium.

She is the author of Burn’s Unit, Poetry to Heal the Wounds of Medical Gaslighting, which was published last year in 2023. The book is based on her lived experiences growing up. With undiagnosed Ehlers Danlos syndrome and several comorbidities, she is seeking to increase awareness about illness and disability.

She’s an amazing advocate. I’m so excited you are gracing us with your presence today. Thank you so much for your time. And it’s so great to finally meet you and have a conversation. Welcome.

Jess Gregory: Hello, Alycia. Thank you so much for having me and for the lovely introduction. I’m really looking forward to our chat.

Alycia Anderson: That introduction was all you, girl. You created all these things for me. So, congratulations. Can you share a little bit about your journey with, undiagnosis? and how all of this influenced your writing. Who are you? Tell us.

Jess Gregory: Yeah, so the interesting thing about my disability story is that I was actually born disabled, but I didn’t realize this, nor did I start self identifying as disabled until about five years ago.

I always like to start this story with a little bit of education because the Ehlers Danlos syndromes they’re generally regarded as disabilities. A rare disease, and there are some subtypes that are rare, but in reality, some of the subtypes, such as the one that I have, Hypermobile Ehlers Danlos Syndrome, isn’t actually that rare, it’s just rarely diagnosed because of a lack of education and public awareness.

So, they’re a group of connective tissue disorders that are characterized by certain gene mutations. And although the defining features do vary a bit among the different subtypes, a big number of patients have a mutation that leads to their bodies creating collagen in a way that is structured differently to the rest of the population.

And because collagen is such an important component of soft tissues throughout the body, that means that we live with a huge range of symptoms that affect Almost every bodily system that we have and so one of the major difficulties of multisystemic disabilities like EDS is that it can be very hard for doctors to diagnose because the modern medical system is set up such that different professionals are each specialized in looking at a specific body system or problem.

And so oftentimes no one is looking at a patient’s full picture of health. Because in retrospect, it seems really obvious that something was wrong with me. And probably to those in the know, quite obvious what was wrong with me too, because one of the major symptoms of EDS is joint instability. And my mom had to start popping my elbows back into me when I was 18 months old.

And I’ve always struggled with things like fine motor skills and coordination. And But it wasn’t until I hit puberty that things got really bad for me. That’s when I started to have chronic pain and chronic hip dislocations you know, I started to struggle with dizziness too.

Things like having to stand up for a long period of time during choir practice was becoming torture for me, you know? And. My parents did obviously want to try and find help and answers for me. So they did take me to doctors, to physical therapists, even a back specialist at one point, and. That did lead to me finding out that I had unstable hypermobile joints, but all the professionals that I saw were very quick to dismiss the severity of my complaints, you know, telling me that sports injuries were normal, that I needed to exercise more.

So. I graduated high school and went off into the world with a pretty big chip on my shoulder feeling like I really had something to prove.

I had figured out how to cope at least temporarily with my symptoms. And I was pursuing my dream of becoming a professional trombonist. And I was studying music at a conservatory in my hometown in Australia. Wow. So while I really loved what I was doing there, that was obviously a very physically demanding choice, of course, holding up like a big heavy metal instrument all the time.

And it was also like, An environment that kind of exacerbated my anxiety that other people would become aware something was physically wrong with me. So in 2019, I then moved to Belgium something we have in common to continue with my studies in classical music. I came here to study with a trombone player that I really admired. And yeah, I really wanted to try to establish myself in the European orchestral scene.

Oh my gosh. But unfortunately, around that time, a whole bunch of factors just converged and really lead to my health reaching rock bottom in a way that I couldn’t ignore anymore.

And so I was having a lot more trouble with my joints popping out all over the place and trouble as well with low blood pressure and digestive issues. And I also just kept getting infections that my body just could not seem to fight off. So I decided to dive back in and try to make another attempt at getting medical attention around this time.

And I started with this just before I left Australia, but I found myself being met with the same like dismissive attitude, being told that I probably like just had post viral fatigue, which, you know, the minimization of post viral syndromes is just like a whole other topic that I won’t touch right now.

But, yeah, basically just to suck it up and get on with it, to put it bluntly. I was thinking, well, if there’s nothing actually wrong with me, then I’m not going to put my dreams on hold, so I pushed ahead with my move, which was, you know, simultaneously the best and worst thing I’ve ever done. Because I think like the physical strain of moving and walking on a European cobblestones and things like that, just, and just burning the candle at both ends.

Cause I was so passionate about what I was doing. I really got to the stage within the first couple of months where I could barely walk anymore.

It was very scary, but it led to a real Sink or swim moment for me because I just felt like either I’m going to get to the bottom of what’s going on or you know, this is just going to absolutely swallow me up. So, I promise I will finally start answering the question about what I’m doing now because I have always enjoyed creative writing.

And I felt myself really being drawn back to it again at this low point in my life. And the collection that you mentioned earlier burns unit, even though it was published in 2023. It was actually mostly written from my bed around 2020 when I was just too unwell to get up and do anything else.

Alycia Anderson: Do you know what I love about that? Just really quick. It’s the same story of Frida Kahlo, who became an artist from her bed as well.

So I love those stories of finding a path to creativity and living when you’re stuck in bed and trying to figure it out.

Jess Gregory: Yeah, Frida Kahlo is a big source of inspiration to me actually.

Alycia Anderson: So, you finding your artistic outlet, and writing, and music, was this your catalyst to your voice and advocacy towards your book

Jess Gregory: yeah. So, I mean, I really felt like nobody else understood what I was going through, and I was obviously in a medical setting, but also to a certain extent.

In my personal life being met with a lot of doubt about the severity of what I was dealing with. And that was very difficult to deal with. And I, I had a lot of grief and anger that I just didn’t have an outlet for. So I really started as me writing for myself. And then I started to write a few pieces for other people I connected with who had been through similar things.

And it led to me, writing more seriously. And I think what I’ve realized is, particularly with poetry as a form of expression, has, devices that allow you to parody and poke fun at things that you might have conflicting feelings around or that might otherwise be very confronting.

And it helps you process it in a different way.

Alycia Anderson: I think you’re going to give us a couple, little examples of your work.

Jess Gregory: Yeah, I wanted to read you a poem from quite early on in Burns unit. It’s called The Letter I Wish I Could Send, and it’s basically a letter to my younger self of the things that I wish I knew,

Alycia Anderson: all right, let’s hear it.

Jess Gregory: Okay.

The letter I wish I could send. Dear Jess. I see you standing there, blight or freeze, but no more fight, constantly uncomfortable, and wondering, is it really that bad? Or does everyone feel this way? Yes, it really is that bad. In fact, one day you’ll look back and realize your entire personality has warped into something you barely recognize.

Angry and selfish, yet somehow complacent and submissive. Hard working, but cutting life’s corners. All without hope of anything in particular to follow. Caved in, and simply waiting to emerge. As the person everyone else thinks you should become. I wish I could tell you that things will get easier. But instead, you will get stronger.

Smarter. More discerning. More righteous. Less afraid. Your shame will turn to rage. Your rage will turn to action. Your action will turn to change. Your change will turn to progress. You’ll go from screaming, everything feels hard all the time and I don’t know why, to declare, everything feels hard, but nothing will stop me from finding out why.

You’ll howl at the moon, thinking of your misfortunes, and of the ones who propagated it. You’ll pine for those who never left your side, and for the years you’ve collectively lost. You’ll despair, deeper than you ever thought possible. You’ll find relief, sweeter than you ever imagined. You’ll realize the terrible pain and power in knowing that all you really have is yourself.

But in the end, that’s all you’ll need.

Alycia Anderson: Ah, powerful.

Jess Gregory: Thank you.

Alycia Anderson: I cannot, I, I need to buy this book. I cannot wait to read it. I’m sure there’s a lot of us that are going through these things, do you have, Advice for the ones that are struggling right now or in the future.

Jess Gregory: Yeah, I think something that really helped me was finding a disability informed therapist to work with me. They can be hard to find, but you know, not impossible. But therapy didn’t really start working for me until I found somebody who had that knowledge and experience of someone who like understands how different your life can be when you’re growing up.

Alycia Anderson: Can you explain, some of the skills that a disability informed therapist might offer you?

Jess Gregory: Yeah, so most of the time it will be in my experience, at least somebody who is either living with a disability themselves or they have a loved one with a disability. So they really have direct experience of what you are speaking about. I would say that I can, I suppose I can only really go off my personal experiences, but the things that have helped me in that regard would be speaking to someone who understands that the challenges that you’re will be ongoing long term. A lot of therapy. It’s often from the perspective of an event has happened and now you need to work through it and get back to your life.

But for me, and a lot of others, there is no getting back to a life free disability, unfortunately. And I think it’s really important to work with somebody who recognizes that, and isn’t trying to make you think and live like an able bodied person, because we were just talking before about how we do that more than enough ourselves already.

I personally am also a big fan of somatic therapy which is like, kind of more from the perspective of not so much like unpacking and analyzing problems, but, Like, thinking about how you feel in the moment and how to help yourself feel better in the moment, helping your body release its memories of trauma and things like that.

Alycia Anderson: Oh my gosh, I love it. Can we talk about some of the challenges, like you’re obviously out in the world advocating for these initiatives, like what is some of the, Challenges that you run into in the industry.

Jess Gregory: Yeah, it’s kind of a tricky question because I think My approach to things has changed a lot over the years, and I think that I am a lot better at not taking things personally and I’m a lot better at speaking about things dispassionately when I need to when I’m advocating for myself, I’ve learned a lot more about, I suppose, the biases that some medical professionals do unfortunately have things like medical misogyny. And furthermore, I have learnt a bit more about, like, the cultural problems in medicine, some of which start all the way from medical school.

And I, and I know from speaking to other people with complex disabilities, would much rather somebody say, I don’t know, I’m going to refer you to my colleague who has more experience, or, I’m not very familiar with this condition let’s, let’s make a follow up appointment when I’ve had time to educate myself about it.

Alycia Anderson: Fascinating. What would your advice to doctors and the medical field, how can they do better?

Jess Gregory: Oh, this is all right. So I would say, first of all, If you want to really do better you should come invite me to speak And I will give you like a 20 to 40 minute talk and I can tailor it to whatever specific problems You’re interested in but I think the key points would be you really need to be brave and reflect on your own internal biases because the reality is we all have them and I for example, if you have a patient who is emotional, are you able to recognize that they might be just extremely run down from having untreated pain?

Or are you going to attribute their physical symptoms to depression or anxiety when there’s maybe a clinical indication that there could be something more than that? Or if you have a patient who’s young and physically active, are you not likely to take their concerns seriously because they don’t look like the type of person who you would perceive as someone who could have a disability?

You know, it’s when it comes to rare diseases, are you? Are you going to test for them, like, ever? Or, if you’ve never encountered a case of a particular disease, is it that subconsciously in your mind, it doesn’t exist? So, are you ever going to test for it, even when there’s a clinical indication to do so?

I did touch on this before, but also, The idea that it’s okay to not be knowledgeable about everything. It’s impossible for one person or even one multidisciplinary team to be knowledgeable about every aspect of the human body because it’s so complex and we’re still researching and learning. Even now.

A good trick that I’ve found. Which could be both like from a doctor perspective and a patient perspective is to either give or to ask for Like an example of how something is affecting them in their day to day life. So, for example, if I said, Oh, I feel really tired all the time. Like, that’s a very subjective statement.

Whereas if I said, Ah, well, I have to crawl up the stairs because I’m really exhausted and I keep seeing stars whenever I stand up. But that gives you a much clearer picture of what I’m going through and how it’s impacting me. I’m also a really big advocate for doctors, where appropriate, providing tools for relief before diagnosis.

So, for example, like pain medication, anti nausea, physical therapy, sleep aids, all that kind of thing. Obviously I understand that there are rules and reasons why you have to be careful with that, but there’s also no need to just torture people needlessly because they aren’t diagnosed.

Alycia Anderson: I love all that. So I’m going to bring this back to your poetry. How do you hope that That your work, your artistry, your writing is going to influence not only the medical community, but really the general public.

Jess Gregory: Hmm. I think there are a number of things. I will say that The poetry is, much more aimed at the patient and their loved ones or allies more so than the medical community. I really think from a patient perspective, it’s about Being able to believe yourself first, even when nobody else is, trust your own body, your experiences, your instincts, and be able to realize that you are not the problem. And yeah, I’ve said it before and I’ll say it again, I really want people to be able to let go of some of the guilt and shame that they have around that.

Alycia Anderson: You are not the problem and let go of guilt and shame that is attached to. This thing called Saran. I love it. Can we end with one more reading of another piece of your beautiful writing?

Jess Gregory: Okay. Yeah, of course. Well, I do have another collection coming out later this year, so I have to Very short pieces, about 30 seconds each, if I might share those with you. Please, absolutely. Okay. So, this collection is called Surviving Tornadoes, and I’ve co written it with another writer, Asia Bartle, and it’s about the intersection of childhood and generational trauma and chronic illnesses.

And how these things impact our relationship with ourselves and others. And it’s really a celebration of the strength of trauma survivors. So it’s another collection that’s very close to my heart. The first one is called wardrobe. And the second one is called gold.

My wardrobe was a portal to an unlikely Alliance in a magical place where I could always fight back brought closer by a common enemy. We waged battle to see who would be king, kicking and punching our way through the endless winter, a fantasy land that no one believed we had seen. For when we returned, so did the raids.

It seems time has stood still here, too.

And this is gold I thought everything you touched turned to gold, even me. Distracted by good looks and bright reflections, until the first scratches revealed the truth. Cheap, rusting metal beneath a thin facade. A mere coating to conduct my energy and conceal the corrosion, unable to protect me, nor you, when everyone else starts to see it too.

Alycia Anderson: You’re amazing. Congratulations on being one of the most talented, powerful, disabled women that I’ve ever met. You have shared, gifted us so much magic today. For our listeners, Jess’s information, how to buy her book, how to book her to speak, how to follow her on all the social media is in the show notes.

We like to wrap up with a pushing forward moment, do you have a little something that you could share with us to leave with a little inspiration.

Jess Gregory: Cool. All right. So since you wanted to catch me off guard, I’ll share, I’ll share a little bit of vulnerability with you. So I actually get very nervous before speaking engagements, even though I love them. And how I get through that is basically I believe that I can do something, even if I feel like I can’t. For example you know, you asked me a question that you wanted to use to catch me off guard. And, I was confident that, you know, even if something didn’t maybe go to plan or you had another question for me that I wasn’t anticipating, that I would be able to survive and come up with an answer.

And I was confident in my ability to keep speaking, even if everything didn’t go the way that I had in mind. Because life doesn’t go according to plan, unfortunately,

and sometimes those unplanned experiences is where the real magic happens and I love it.

Alycia Anderson: Thank you so much for gracing us with your time and your, your beautiful talents today.

I’m so excited for our community to. hear this episode and engage with it. It, you really are a very unique, special, beautiful woman. And I’m so happy that our paths have crossed. Thank you so much for doing this.

Jess Gregory: It’s my absolute pleasure. Thank you for having me. And If you’ll allow me to say one more thing, I wrote a little something for you.

Alycia Anderson: Oh, okay.

Jess Gregory: When Alycia is speaking, she shines like a beacon, the lighthouse guiding us through. These ablest harbours, our embers of arbour, spark to flame in the glow of her truth. That push, pedal, or crawl, our conviction will roar, when united, our differences bloom. Just wanted to say thank you for having me, and for everything you do.

So. Yeah.

Alycia Anderson: Thank you so much. I really appreciate it. No idea how much that means to me. Wow. Thank you.

Jess Gregory: Okay, don’t do that. It’s going to make me cry.

Alycia Anderson: Such a cry baby. That is one of the most beautiful gifts I’ve ever been given and you have no idea that hit me to the core so thank you so much.

Oh my gosh. Thank you so much. We will absolutely share that.

Jess Gregory: Okay, fantastic.

Alycia Anderson: Okay, I’m gonna wrap up. Wow, that was really, really nice. Okay, Jess, thank you so much for it all and I can’t wait to continue our friendship and keep it going and to our community for showing up each and every week and helping us grow.

Thank you so much for showing up again. I know you’re going to love this conversation and we will definitely see you next week. This has been pushing forward with Alycia and Jess and that is how we roll on this podcast. We will see you next time.