Episode 13. Chronic Illness Trauma: 3 Steps to Protect Your Physical Wellbeing

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Hey there, Teisha here, and welcome to episode thirteen of Wellbeing Interrupted. Today, I want to talk about trauma. This is such a massive topic, and over the coming weeks, I’ll definitely delve more into this topic. But for now, I want to share my own experience and the realisation, I guess, that living with a chronic condition, like MS, can create trauma in your life.

And that was really highlighted again when dealing with a stage four breast cancer diagnosis and the impact that had on my voice. And I think when I lost my voice, when I couldn't get more than a couple of words out, it was almost like that experience made the invisible visible. And I realised my body is absorbing so much stress and anxiety, and even though I thought I was dealing with it, obviously, my body wasn't coping. My voice and the loss of my voice and muscle tension dysphonia really created a window into what was going on behind the scenes. And that's been a great experience for me, not that I love having all these issues with my voice. But it made me realise that I have to be kind to myself. I need to look after my physical wellbeing and really acknowledge the stress my body has been put under over many, many years.

So if you're dealing with the challenges of a life-changing illness or health condition, another good episode for you to listen to.

Personal Reflection: Trauma Can Impact Our Physical Wellbeing.

For those of you who haven't heard my story about my voice, the episode which I'll link in here was actually a pre-episode. The host, Tasha Rose... In it, I shared a little bit about what happened to my voice, but I'll quickly give you a bit of insight now. And although it's heaps better than it was in episodes one, two, three, and early on, it's still not perfect. But as I mentioned, I didn't want the issues with my voice to stop me from sharing the insights I've gained over the last twenty-five years.

So, it was back in October twenty-two. And I remember being in a Zoom meeting with the work I was currently doing, which was auditing. Not a financial auditor, but with my social background, I was auditing disability services and chatting to participants of different programs and seeing what their experiences were. And it was in some of these end-of-the-day meetings, after I'd been talking a lot during the days, that I noticed difficulties maintaining the volume in my voice as I spoke. Others didn't really notice, but something just didn't feel right.

Initially, I actually thought it was COVID, and I had a COVID check, and that was negative. So it wasn't that. The next day, I had more meetings, more interviews, and my voice kept getting weaker. Talking was becoming an effort. And that night, my mind started racing. I tried really hard to reign it in, but having dealt with a stage four breast cancer diagnosis can make that really challenging.

And all of a sudden, I thought, what if my cancer had spread to my lungs. It'd already gone to my liver and sternum. And the lungs were a terrifying possibility. So over the next few days, my deteriorating voice became more apparent to those around me. And I thought, I can't ignore it now. So, I had a break from work and started investigating.

First call was my local doctor. My throat, my lungs were fine. Blood tests and X-ray all clear. Next on my list was my oncologist. To my relief, the tests and scans indicated no cancerous activity, massive relief, but still, I had no idea what was going on.

Then, this is what happens when you've got lots of different conditions. I called my neurologist. And now I was worried this was related to MS. But again, no, it wasn't neurological. And I kept thinking, what is it? I had no idea why I was having issues to walk in.

Thank goodness, in living with MS, I've always surrounded myself with allied health professionals. And my neuro-physiotherapist was really concerned during a Saturday morning session about the rapid deterioration of my voice. And during our session, she connected me with a neuro speech therapist. A massive relief as after a few weeks of sensing my body wasn't right, I finally received some answers: muscle tension dysphonia.

And what had happened was the muscles around my voice box had tightened so much that my vocal cords couldn't work correctly. And in my work, I've always relied on my voice, but as I spoke this time, my body was, I believe, dealing with the trauma of a stage four breast cancer diagnosis. And everything was tightening up.

And sometimes we really understand our bodies, and I truly believe that this was a perfect storm. You know, my body, my upper body is always really tight, and I have spasticity because of MS. And I was holding myself so tightly through the stress and fear of my cancer diagnosis. And speaking so often with my job just put too much pressure on the muscles around my voice box.

And it's like my body all of a sudden said, enough. You can't keep pushing yourself. You can't keep pushing yourself through all the anxiety you're dealing with. You need to stop, and you need to process what's going on. And I literally couldn't work. So, I had to stop doing the auditing job. And if I hadn't lost my voice, I don't think I would have stopped. I would have kept pushing on, and that wouldn't have been good for my emotional well-being.

So, I had no choice but to start processing and dealing with what was now my new reality: stage four breast cancer and MS.

The Visibility of Invisible Illness

There's often a lot of information around, especially on Instagram and through different communities, about invisible illnesses. And I think sometimes we don't acknowledge to ourselves all of the things that are happening beneath the surface. Losing my voice made the invisible visible. It made me recognise the stressful events I'd confronted over the previous six months, and the list was so intense.

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As I've shared, it was a stage two breast cancer diagnosis, emotionally preparing for a mastectomy and having the surgery cancelled last minute. Being told my cancer had spread and was now stage four, hormone therapy bringing on menopause. And I hadn't even started experiencing perimenopause, so it was really full-on for my body to cope with. Surgery to remove my ovaries, an osteoporosis diagnosis, then in between MS scans, appointments, and treatments. And at the end of it all, this amazing PET scan result, where at that stage there were no cancerous cells detected in my body.

So, as I've shared, those cancerous cells then came back. Then I had my mastectomies and now it's back in remission. So, all of this happened, and it's such a rollercoaster. And I'm not surprised that the stress and anxiety filled my body with such tension. And sometimes, I think when you're in the zone of one day at a time, the enormity of what you deal with goes unnoticed.

But losing my voice demonstrates that my body was absorbing so much tension that even the muscle around my voice box was affected. And that's why I call my voice, at times, the sound of trauma because without me losing my voice, I don't think I would have recognised the trauma I've experienced. And I wouldn't have then faced that trauma and processed it as well.

Three Steps to Protect Your Physical Wellbeing

As I said in the intro, trauma and the experience of trauma, when you're going through a diagnosis or the relentlessness of living with a chronic condition, is such a massive topic. And I'm not an expert to talk about it all, but what I guess I want to do is share with you what I've done over the last twelve months to really cope with the trauma of my diagnosis. And in what I'm sharing, the focus at this stage is really on how I've gone about protecting my physical well-being from the trauma caused by an illness. Because I don't want to lose my voice again. And I also want to make sure that what I'm going through isn't going to detrimentally impact my MS, because the stress and anxiety can really have an impact on my mobility, and I want to minimise that as well. Plus, I want to share these insights with you, as I always say, it's not necessarily about sharing insights about a specific illness. But it's about sharing insights we've each gained to help others navigating through the same experience. And for many of us, that experience is the trauma of living with our illnesses.

So, the first thing I've done, and what I'll continue to do now, instead of pretending what I'm going through isn't traumatic, because I can truly say that I'd never equated what I've gone through with my answers as traumatic, but then I look back and I think, "Oh my goodness. I was in my twenties, unable to move, spending months and months in hospital. Of course, that's an unbelievably traumatic experience." Not being able to move, being reliant on others for your personal care. Petrified that that level of assistance would be required for the rest of my life, unsure whether I'd ever regain functioning. So that's scary. It's traumatic.

And now I've promised myself, whatever happens with my cancer, these are the three things I will do:

Step 1. Acknowledge the trauma.

First thing, I think it's important to do is to acknowledge it. Recognise the impact trauma can have on your body. Recognise there's no escaping the fact that living with an ongoing illness or receiving a massive life-changing diagnosis is traumatic. And it's the start of so many stressful events that you need to cope with. And that is unrelenting. In last week's episode, episode twelve, I talked about the stress of medical tests, and that's only one small component of what we have to deal with in living with an illness. So it's the stress before a test, it's stress during a test, after a test, getting results, it's the stress even of just sitting in a hospital being pumped with drugs and a really full-on treatment plan. So, you don't need to relive every single moment that might be traumatic or stressful or create anxiety in living with your illness. But what I'm doing is recognising the enormity of what I'm dealing with and the impact it will have on my physical well-being. And that's what I really want to encourage you to do.

Step 2. Be kind to your body.

So in living with your illness, acknowledge that it is stressful. It can be really traumatic, and what you're going through is significant, so you don't need to minimise that. Acknowledge it.

Secondly, be kind. So if you've acknowledged the trauma your body is going through, the next step is to be kind to your body. And remember, I'm talking about the impact trauma can have on your physical well-being. So even if emotionally, mentally, you're feeling okay, even if you've done work with a counsellor and you're processing your emotions, that's great, but don't forget that your body may be suffering in silence. Especially if our bodies are a bit compromised because of the illnesses we're dealing with. And sometimes, I forget that my body needs a little bit more attention than I sometimes give it. And sometimes, I don't think I give my body the empathy that it deserves. My body has been through so much with MS. And instead of fighting through that and pushing myself through that to the detriment of my well-being, I needed to start looking at my body with more empathy and providing my body with the support and nurturing it needs.

Step 3. Be proactive.

Okay, so you acknowledge the trauma, you're kind to your body. Next is to be proactive. And this is what I'm doing now. My voice is a reminder to not wait until your body says enough to give it attention, be proactive, and build a network to help you live well with your illness. Emotionally, mentally, and physically. And that means that you can call on your network in a moment of crisis. But you can also build your resilience by continuing on with this work. And for me, resilience really is learning and growing so you can apply that the next time your illness creates a challenge in your life. And my voice going was such a stark reminder that I needed to keep being proactive and looking after myself.

I really stepped up the number of sessions I was having with my neuro-physio. I'll send a speech therapist as well, to make sure that no matter what stressful situations happen in the future, I have the insights and exercises to ensure my voice holds up. And I had so many appointments with an osteopath, and she also worked on muscles around my neck and in my mouth. Who would have thought? The osteo even put rubber gloves on and hand right into my mouth and press on, gosh, it was so sore, on certain muscles in my jaw to release them. So, there are so many things that I could do to release those muscles, but now I don't ever want them to get as tight again.

So, like with any illness, the approach is the same: building resilience is focusing on our bodies and ensuring that we maximise our functioning. And the other thing I did, and I'll continue to always do, is energy healing. And I remember saying to my neurologist, and he's like, "Well, it's not related to MS," I was very happy with that because that was a concern for me. And I said to him, "Well, I think it's time to focus on my throat chakra and clearing that." And he's like, "Whatever works." And for me, that's always been open in my mind to different ways of thinking about my health. So clearing my throat chakra, doing energy healing work, along with the physio work, along with the osteo work, along with the speech therapy.

For me, it's about being proactive about building my resilience. And this resilience is what really enables me to look forward with confidence, as I know no matter what happens, I can have an impact on my experience, and that includes having an impact on protecting my physical wellbeing.

Chronic Illness Trauma: Healing Recap and Quiz

So, today we've really just talked about the impact traumatic events that you experience, either being diagnosed with your illness or living with your illness, with the relentless challenges that keep happening. This is trauma, and this can physically impact your health. And for me, what I've done since my voice left me, since muscle tension dysphonia took over, is I've realised that from now on, if I go through a stressful event in relation to MS, or in relation to cancer, or whatever else it is, I need to acknowledge it and recognise the impact trauma can have on my body. I need to be kind to my body. And I need to always remember that my body may be suffering in silence, so I need to look at my body with more empathy, supporting and nurturing what my body needs.

And then I need to be proactive. I need to take the event as a reminder to continuously work on my well-being, not to wait until my body breaks down, but to instead proactively build a network that can keep helping me live well with my illness. And a network that, if my body gives up on me, I know who to call and who can help me. Trauma is such a massive, massive topic. Today we've just really focused on the impact trauma can have on your physical well-being. But there's so much more we can talk about.

And in the coming weeks, I'm really going to start having different guests on Wellbeing Interrupted. And I think we'll all really benefit from other people's stories of how they've dealt with the trauma created by their illness, but also different approaches to how we can process trauma in our lives. And before I go, remember that quiz I keep talking about? Well, today's topic on trauma really aligns itself with the second stage of emotional turmoil. So, if you've got a spare few minutes right now, visit hurdle2hope.com/quiz.