Episode 5. Challenging Illness Narratives: Transforming Language to Empower WellbeingFeb 06, 2024
Have you ever listened to the words used to describe living with an illness and felt they just didn't sit right with you?
In this episode of Wellbeing Interrupted, we dive deep into the language surrounding illness narratives and explore how certain words can profoundly impact our mental and physical health. From "battle" to "victim," I share my personal journey navigating these terms while living with MS and stage four breast cancer, highlighting the power of words in shaping our experience and mindset towards illness.
This is about recognising the weight words can carry when living with an illness or health condition. This episode is close to my heart, as it reflects not just my own struggles and revelations but also a broader conversation on how we can collectively shift towards more empowering ways of discussing illness.
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KEY EPISODE TAKEAWAYS:
- The significance of reevaluating the "battle" narrative and its implications on those living with chronic illnesses.
- Understanding that being in "fight" mode isn't the only way to confront illness and the importance of finding peace and healing in other forms of strength.
- Rethinking what "incurable" means and how focusing on living well can offer a more hopeful perspective.
- Discussing the term "terminal" and how shifting focus from end-of-life to quality of life can empower individuals facing serious diagnoses.
- Moving beyond labels such as "sufferer" or "victim" to embrace a narrative of empowerment and resilience.
ABOUT THE HOST:
Teisha Rose, the voice and vision behind Hurdle2Hope®, shares her incredible journey and the lessons learned from living with multiple sclerosis for over 25 years and now stage 4 breast cancer. These mindset insights offer hope and guidance to others whose wellbeing has been interrupted by health challenges.
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Episode 5. Challenging Illness Narratives: Transforming Language to Empower Wellbeing
Host Teisha Rose
Introduction to Challenging Illness Narratives
Hey there, Teisha here and welcome to episode five of Wellbeing Interrupted. Today, I want to talk about challenging illness narratives. So remember what I said in previous episodes: It's all about challenging how we think about and experience our illness and all aspects of our life. And once diagnosed with an illness, I really believe we're exposed to language that really has a detrimental impact on our quest for wellness. In this episode, I chat about language and narrative views when discussing our illness. And then I really want to focus on five words that have really had a negative impact on my mental health but also on my physical health as well. So, I'm excited about this topic. I've also had some speech therapy the last few days, so I'm hoping you're noticing my voice is getting a little bit better. So let's see how it does in this episode.
Welcome to Wellbeing Interrupted. The podcast dedicated to exploring the transformative power of a healing mindset. I'm Teisha Rose, your host and the founder of Hurdle To Hope. If you're on a quest to not just survive but thrive after a life change diagnosis, then you're definitely in the right place. Living with MS and now stage four breast cancer has taught me a vital lesson. In the face of a life-changing illness, our mindset is everything. Each week I'll share insights, tips, and strategy to help you build a happier, healthier, more balanced life. So let's begin your journey from hurdle to hope, starting right now.
The Battle Narrative: Personal Struggles and Insights
As soon as I was diagnosed with MS, I remember lying in the hospital bed and receiving a booklet with images in it of women using walking aids or sitting in wheelchairs. And straight away, that became my worst-case scenario. And I kept thinking MS isn't going to win. I'll do everything I can to stay out of a wheelchair. And initially, I guess that was good because it really drove me to recover from some incredibly aggressive relapses. So I was so focused. I was so determined to work with the physios to learn how to walk again. And it was a gruelling process; it was awful. Like back in 2000, I remember lying in a hospital bed unable to move, you know, for weeks and weeks and weeks and been dependent on bedpans and having someone wheel me into a shower to bathe me. I was twenty-five, so that level of dependency was really scary. And I was so scared that that would be me for the rest of my life. I just had so much motivation to get better, to get walking again, and I was so fortunate to have incredible physios around me that helped me to do that.
But looking back now, I think in my mind, then I thought learning how to walk again, I thought I had won. I thought I'd beaten the odds and I'd beaten MS. However, fast forward twenty years. Although MS isn't active in my body, my legs haven't fully recovered from all the relapses I had when I was in my twenties and early thirties. Although MRI scans show my disease isn't active, which is amazing, but there's still damage in my nervous system from all the aggressive relapses I had years ago. So walking is challenging. You know I don't walk like I used to, but I guess for me, that's difficult, but I also am so appreciative of bouncing back from those relapses. And I think gosh my legs have been through so much. I am up and about, which is amazing.
But yeah, I can still struggle with my walking. I use a walking stick and compared to, you know, years ago, I was devastated about having to have a walking stick. I use that and I don't mind at all. I've more recently started using a walker. And to be honest, that turned my stomach to begin with, and I was embarrassed to be seen with a walker. And I know my internal dialogue was if I use a walker, that means MS has won. That means I am going backwards, that means I am progressing, and I'm not. It's just that I haven't been able to focus on my strengthening while I was recovering from all the surgeries with cancer. And I'll talk about this a bit later on but even if I was progressing, even if I did need a wheelchair again, that doesn't mean MS has won. Ending up in the wheelchair and embracing life, that means you've won.
Years ago, as I said, I was given a brochure of someone sitting in the wheelchair when I was first diagnosed with MS, and that was my worst possible scenario. But now I really think my worst-case scenario would be sitting in a wheelchair absolutely miserable and not wanting to live well. So for a walker update, I now have two walkers, one off-road walker which enables me to explore our new block of land, which I've spoken about in the last episode. And there are so many rocks on there. Without a walker, I'd fall over. So I have that walker, and the other day, I actually walked a huge distance to our front gate, something I could never have done before, but I was so proud and I shared that on Instagram. So if you're not following me on Instagram at Hurdle To Hope, hurdle number two, I hope I share all of these different things that I'm doing.
And I've also said to my physio I really want a nice-looking walker as well for when I go out. So I've got this beautiful-looking white walker, and it just means I can get out more. It means I can go shopping. It means I can do so much more. So having these walkers doesn't mean MS has won. It means I'm determined to live well with my illnesses. And having the walkers doesn't mean my determination to get better has gone. You know I'm not thinking well I don't need to work on my exercises anymore. So I'm more determined than ever to keep exercising, to keep strengthening my legs. But now I feel safer, like I won't have a fall, which was really important after my mastectomies. The thought of falling and hurting my wounds was, you know, too big of risk. And when I see my reflection in shop windows, I automatically cringe seeing myself with a walker, but now I think no, don't be upset by this, think, well done. You're outside and living life.
Five Words That Shape Our Illness Experience
For the rest of this podcast, I want to look at how these narratives and the language we use around illness can really stop us from living well. And as I go through this, you might agree or disagree. That's fine. It's all about challenging our thinking and really starting to question why we take on some words and question whether they have an impact on you. If they don't, fine. That's great. If they do, great. We'll change them.
#1 The Impact of the BATTLE Narrative
So as I've touched on, the first word we'll talk about is battle. So as I've shared, this language, I believe, can really stop you from living well. As you start thinking about making changes in your life such as a walker, like I did, or even getting a cleaner, getting home help to help you out, or aids in the shower or a ramp at home. If you're not wanting to do these things, start challenging yourself as to why. Are you thinking that these changes mean your illness has won? And keep reminding yourself your illness doesn't win if you make changes. What you're doing is taking your power back. What you're doing is saying, I want to live well. I want wellness to be my priority. So any changes you're making are helping you to live better, is living in alignment with my priorities. These changes mean you can be safe. These changes will help you conserve your energy.
And I know myself, I was really hesitant to have a cleaner, and then I rang up different girlfriends, and they had cleaners. And I'm thinking, I'm living with MS. I don't want to have a cleaner. How ridiculous is that? You know, have a cleaner help you conserve your energy for things you want to do.
Now that I live with cancer, I'm also really aware of this battle narrative. So if we're watching the news, often it's reported that someone has passed away, that they've lost their battle with cancer or whatever health condition or disease they had. And when we stop and think about that, that's really an awful way of saying it. It doesn't show what someone's achieved since being diagnosed. It's like saying, yeah, the loser and cancer is the winner. We're all going to die, but death isn't about losing; we have so many wins before that happens.
And if Hurdle2Hope, if the Hurdle2Hope Roadmap, if this podcast can have an impact on others, then I'm the winner, not cancer. So next time you hear the word battle, reflect on it and really think about what you think about that term. And next time you face with making a change in your life because of your illness. Remember, that change is not just because of your illness. It's not because illness has won; it's because you're choosing to live in alignment, you're choosing to prioritise your health, you're choosing to live well, to embrace life.
#2 Navigating Illness Beyond FIGHT Mode
So the next word I want to talk about is fight. You're in the fight of your life. Have you ever heard of that? And this is very closely aligned with the battle narrative, but I think it deserves its own mention. And this doesn't mean I can't be angry or pissed off at what's happened, of course, we can. And in episode three, I really delved into that saying, you know, we can't be positive all the time, but that doesn't mean we have to be negative. Doesn't mean we always have to be filled with anger. So yeah, let's be authentic to how we're feeling, but I really believe for me, and it might be the same for you. Being in this fight mentality gearing up for the fight of my life really doesn't create the right environment to heal. It creates such tension in your body. And I think sometimes we align fight with strength, and I think that's wrong. I think we can still be really strong, but that doesn't mean we have to be in fight mode.
So when I was being wheeled into the theatre to have my mastectomy, I wasn't thinking, clenching my fists in Kim right, you know, I've got this cancer where in for a fight I'm going to get rid of you. That wouldn't have helped the operation go well. Instead, I listened to a guided meditation before I was wheeled in that a healer, an energy healer I go to, prepared for me. I was practising my breathing. I was staying calm. I was visualising the surgery going really well. And the surgeon said it went amazing; she said there was hardly any blood loss. You responded really well. And I know that if my body was tense, if I was focused on fighting this cancer, then the surgery wouldn't have gone as well, and I wouldn't have healed so well.
So for me, it's not about fighting. It's really about creating the right environment that you can tap into your strengths. And in living with MS, I know, um, strong. I know that I have the tenacity, determination to get better. I know that, and I'm applying that with my life now with cancer. But all of this is with the goal of healing. It's not with the goal of winning a battle or fighting cancer. My goal, I want to create an environment where the cancer is no longer needed, you know that I learn and grow through this experience. And for whatever reason the cancer came, that it's no longer needed. To teach me anything. And I know that might sound a bit woo-woo, and that's fine. And that's what works for me. But I guess what I want you to get out of this is be authentic to your feelings, be angry, but really start questioning why you want to be in fight mode and whether thinking about that and, you know, gearing your body up to have the fight of your life, whether that's really encouraging your wellness.
#3 Redefining INCURABLE illnesses
Okay, the third word is incurable, and technically, I have two incurable diseases, MS and now stage four breast cancer. But I still have an issue for me if I'm going to be authentic in my journey towards wellness if I am to live in alignment with that priority, then I don't want to keep focusing on the word incurable. Medically, there is no cure for MS or stage four breast cancer. They medically can't eliminate the disease, and that's true. But medically there are many treatments available. And as I'll always say, I combine natural therapies with medical intervention. So I'm doing what my oncologist and neurologists have worked out with me.
And when I was diagnosed with MS, there was only one available. And now there are so many different treatments available that the experience of people being diagnosed now is very different from in the nineties. But back to the language of saying I have an incurable disease for me saying that I live with an incurable disease seems pointless. To start with, a cure may be just around the corner. So let's focus on that. But I also don't want to keep saying it's incurable. It's incurable. There is no cure. Because that's giving energy to the wrong outcome.
But it's also only focusing on an outcome in response to medical treatment. And early on with MS, medical treatment was the only option I thought there was. But over the years, my mind is definitely opened up to all different types of natural therapies that can also help me on this journey. As you'll find out, one of those natural therapies that I'll talk about is energy healing. Also, especially since being diagnosed with stage four breast cancer, I've been regularly having cranial osteopathy. I think I've got it right. I'm hopeless with all the names of the different treatments, but I know that that healing has also really helped me.
And I'm definitely not an expert in all the different natural therapies out there. But I think I just want to, in this context, say that saying I have incurable breast cancer, saying I have incurable MS, doesn't give any energy or doesn't even acknowledge the impact natural therapies can have on the outcome.
#4 TERMINAL Diagnoses and Thriving
Okay, so the next word is terminal. And this doesn't relate to MS but certainly does to having stage four breast cancer. So it relates to, you know, you might hear the term metastasised or metastatic cancer, which is also advanced in stage four. And there are lots of other conditions and diseases which are considered terminal. But what you'll never hear me say is I am T. So you can work that out. I won't say it in that context. I will sometimes say I have what is considered a terminal illness.
So if you believe where thoughts go, energy flows, which I do, then I don't want the energy flowing to being terminal. So let the energy flow to I am healthy. I am well. I am living. Some would think listening to this that I'm in denial, but I'm not. I know I have stage four breast cancer. I know medically that's treatable but there's no cure for it. And I'm also not glossing over how difficult it is for people living with stage four cancer.
Being part of private Facebook groups relating to, um, stage four breast cancer listening to others share being taken into a hospice because they've only got days to live. It's heart-wrenching, and the loving messages being shared amongst us, holding space for others in palliative care, has been so beautiful. And I feel very privileged to be, um, privy to that. So me not wanting to say I am T isn't denying the reality of this disease I have, but I still feel now, I still feel strongly that my overall wellbeing will benefit from me focusing on living.
So again, it's not denial, but it's just I don't see the point in focusing on being terminal instead of being alive and embracing life.
#5 Beyond SUFFERER & VICTIM
Okay, so the final word, although there are two words here, is sufferer or victim. And I think sometimes they're interchangeable, so I've put them together. So often with chronic illnesses like MS, I'm referred to as an MS sufferer. And when you think about it, this narrative can make us feel really passive, and it's also really disempowering.
When I teach my Hurdle to Hope roadmap, which I chat about in episode two, you can also follow a link in the show notes and access a masterclass where I go through this some more. The second pillar is all about taking our power back. So when I was struggling to live well with MS, I know I viewed MS as this external force that I had no control over. I was sitting and waiting for the next relapse to happen, for the next admission to the hospital.
It wasn't really until I started being more active in realigning all aspects of my life to living well that my experience with MS changed, that eventually the relapses dot. I could have easily fallen into the victim mentality and that narrative when I was diagnosed with stage four breast cancer. I could have, you know, been saying it's not fair. You know I've got two diseases that are really significant and it's really challenging balancing both of them. But staying in this victim mentality, thinking of myself as a sufferer, would have denied me the opportunity to have an impact on my situation.
And I know if I had felt so disempowered, there's no way I'd be sitting here telling you that I'm in remission for both of my conditions. You probably gather then that I definitely do not see myself as an MS sufferer, nor do I have the victim mentality. Just think about it. I am a sufferer. I am a victim. No, no. We can't be saying that.
We will never live well with our conditions if we adopt this narrative. And this is why I'm so passionate about our mindset and the power of our mindset, and that's why I've created the Hurdle to Hope roadmap, as we need to empower ourselves to have an impact, and words like sufferer, victim, and just subscribing to these narratives without even thinking about it will really stop us from living well.
EPISODE CONCLUSION AND SUMMARY
The Power of Language in Our Healing Journey
Well, we've come to the end of the episode, and hopefully, you found yourself challenging the narratives, the language that we're exposed to in living with our illnesses. And as I said, if you don't agree with everything that I've said within this podcast, that's absolutely fine. That's what we want to do. We want to challenge each other to look at life differently, to gain new perspectives because when that happens, that's when we learn, that's when we grow, that's when we challenge ourselves to think about our illnesses differently and to live well. I hope.
So today, in this episode, I've looked at five words that have had an impact on me, and they've probably had an impact at some level on yourself as well. I've really had to stand back and reflect on whether these words were conducive to my wellbeing or whether, in fact, they were adding to my stress, my anxiety and fear, and whether they're really stopping me from embracing life.
So the first was the battle narrative and to say someone has passed away because they've lost the battle with their illness doesn't acknowledge all they've achieved and the impact they've had on others and what an amazing life they've led even after a diagnosis that they haven't lost. And this battle narrative for me has really stopped me over the years on making decisions like using a walker, which is good for my health and wellbeing, but I didn't want to do it because I thought in some way MS had won and I had lost, but we know that's not true.
Then I talked about the fight mentality. And for me, I find being in fight mode is not conducive to my wellbeing, and there are other ways that we can tap into our strength without subscribing to this fight mentality.
Then the third word was incurable. And I talked about how I struggle with using this word even though I have two diseases which medically there is no cure for, but I know for my wellness by keeping on saying I'm incurable. That's not acknowledging, not only what medically may happen down the track but also the power of natural therapies.
Then I chatted about the word terminal and how I don't ever say I am t because I think that gives energy to being terminal rather than on living. And again, I really stressed that not saying or giving energy to terminal doesn't mean I'm in denial. So it's not denying that stage four cancer is considered the terminal illness, but I just choose not to say and focus on that word.
And finally, we looked at the words sufferer or victim, which are often part of the narrative, especially for chronic illnesses, and how that can be really disempowering.
So I've covered a lot. And yeah, so they're my five words. You might have different words. I'd love you to DM me @Hurdle2Hope. Hurdle2Hope with a number two. Um and yeah, tell me what you think, tell me what you struggle with, and let's start a conversation so we can all strive to live well with our conditions. Chat soon.
WELLBEING INTERRUPTED OUTRO
Thank you so much for joining me today on Wellbeing Interrupted. If today's episode inspired you or you think it could help others, please share it by tagging at Hurdle2Hope in your Instagram stories or just by telling a friend about it. To spread our message of healing and hope to those who need it most. Your ratings and reviews are invaluable by taking a moment to rate and review on your listening platform, you help us attract inspiring guests and create content that empowers all of us to thrive. Don't forget to follow me on At Hurdle to hope for more insights. I'd love to see you there. Always remember to thrive after a life-changing diagnosis, your mindset is everything.