58: No Diagnosis, Just Symptoms—What Now?

Are your symptoms real if no one can give you a diagnosis? 

Have you ever felt like something was wrong with your body, but no one could give you answers? You’re not alone. The journey to a diagnosis can be frustrating, exhausting, and emotionally draining. 

In this episode of Wellbeing Interrupted, I reflect on my conversations with Ronni Morgan (Episode 47) and Katerina Vujić (Episode 56), who both faced long, difficult roads to understanding their health conditions. 

Key Takeaways from This Episode: 

• The powerlessness of searching for answers  
• “Is it all in my head?”—The emotional toll 
• Five things you can do if you are still looking for answers 

 
Show Resources: 

🎧 Listen to the full episodes: 

• Episode 47 with Ronni Morgan 
• Episode 56 with Katerina Vujić 

If this episode resonated with you, share it on Instagram and tag me!  Sharing could help someone else feel less alone. 

Until next time, take care and keep advocating for yourself.  

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Teisha xo

Always remember to thrive after a life-changing diagnosis... Your Mindset is Everything!


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Transcript

Transcript Episode 58: No Diagnosis, Just Symptoms—What Now?

[00:00:00] 

Teisha Rose: Hey there, Teisha here and welcome to episode 58 of Wellbeing Interrupted. I'm out of the caravan and this episode comes to you from back to the resort. Um, I'm staying at, so I'm talking into the microphone, looking at a beautiful golf course. Hopefully the sound is okay. Um, but yeah, I'm back here because after finding out that I am a start up exhibitor.

The Australian Healthcare Week, so very excited about that. I needed a bit of space to get creative and prepare for that in a few weeks time. I should say in the show notes, if you're a healthcare professional, come join me, come meet up. There's free tickets for that. So there's a little bit of a plug. Um, so yeah, so I've escaped from the caravan and sitting here, feeling very relaxed and not stressed about all the work I have to do.  

So today's episode is a [00:01:00] solo episode. And it's called No Diagnosis, Just Symptoms, What Now? And why I think it's really important to now reflect on some of the incredible guests I've been fortunate to have on Wellbeing Interrupted is I don't want to just interview people and not unpack some of the conversations I've had and chatting to a friend the other day Who's experiencing so many symptoms with their chronic illness.

All of a sudden I was saying, Oh, have a listen to episode, um, episode 47. I spoke to Ronni Morgan and they've been through something similar to you. And then I said, Oh, then have a listen to episode 56. I spoke to Katerina. Katerina had something very similar happen to her as well. I then thought.

If my friend's asking about this, then hopefully [00:02:00] it's something that will help you as well. So in today's episode, I want to talk about what happens when you know something is wrong with you, but you can't get a diagnosis. The frustration, the doubt, - the exhaustion of being dismissed or left without clear answers.

But then hopefully making sure you know that you're not alone in this frustration that it happens so often. And that's not a good thing, but it does happen. And those living with chronic illnesses really do deserve to be heard.  

And if you're like me, I mean, I fortunately live with MS and my diagnosis was really straightforward. I found out very quickly what was wrong with me, but I know that would have been so frustrating if those answers hadn't have come quickly.

So if you're like me and you haven't experienced this, Still listen, because it's so important that [00:03:00] we support each other in living with our illnesses.   

Okay, first up, I want to talk about feeling powerless in your effort to get answers for all the symptoms that you're [00:04:00] experiencing. Back in episode 47, I spoke to Ronni Morgan. Ronni livess with hypermobile Ehlers Danlos Syndrome, I hope I've said that right, HEDS for short, but this diagnosis took a long time to happen, and Ronni opens up about this long road to diagnosis. The challenges of then living with chronic pain and how they've gone on to redefine their life. But I love this conversation and the snippet I've taken out of it is where Ronni talks about even writing a letter to the doctor that didn't listen to them during the whole diagnosis phase.

So have a listen to this bit of our chat, 

Teisha Rose: Because lots of people will be in the same situation of, it's like [00:05:00] you're banging your head against a brick wall, just trying to come up with answers and not being treated with respect.

Like you saying, I want a certain type of MRI. That being dismissed, like how frustrating was that? 

Ronni Morgan: Incredibly. And I will say the way that I, because I felt powerless in those moments, because I wasn't being listened to or heard. And when I found out after, well, when I found out about having hypermobile Ehlers Danlos syndrome, which I should probably Give a little background about what that even is at some point.

But, um, when I found out that I had that, and when I found out that I had cranioservical instability, I sent a very lengthy email to my neuro, to my neurologist here in town. And I was kind, but I was also very direct. 

Teisha Rose: Yeah. [00:06:00] 

Ronni Morgan: And I said, you dismissed me when I told you these things. And as it turns out, those things are exactly what I needed to get the answers that we've been looking for for over a year.

And I understand that in medical school, you are taught to, if you hear hoof, hoof beats, think horses, not zebras. That's what they learn in medical school. But I said, sometimes you're going to come across a zebra and that is me. And I hope that the next time you come across a complex client or patient, you're that you think of me and you do things a little bit differently.

And writing that letter, I never got a response which is fine, but writing that letter Allowed me to take some power back 

and I 

needed that. 

, 

Teisha Rose: please listen to episode 47 if you want to hear more about Ronni's incredible story. But what I hope this [00:07:00] does

is really highlighting the power of asserting your experience even when it feels like no one is listening and it's okay to push back and demand to be heard. Of course we need to do that in a nice way. It's not about Advocating for yourself and being really aggressive in that. But it's about wanting to be heard and having enough confidence in yourself that this is what I'm experiencing.

This is what I need you to do for me. And even if that means changing providers, changing doctors, or writing a letter like Ronni did, The reality is that complex conditions exist, what you're presenting might be different to , what your doctor's other patients are presenting with, and sometimes a deeper investigation is necessary, and [00:08:00] it's tough because you've got to keep turning up.

You know, , you're probably feeling really fatigued and exhausted by the process, but hopefully in the long run, that extra effort that it takes to be heard, to have more investigations, to get an answer, to get a name of what you're experiencing , . And in the long run, that effort hopefully is worth it. 

Next, I want to go back to another Hurdle2Hope story episode with Katerina Vucic. Katerina lives with so many different chronic illnesses. Again, I loved this conversation and the perspective Katerina introduced to really trying to find answers to all the different things she experienced.

And Katerina really opened up about the mental and emotional toll of being made to feel like she was [00:09:00] imagining her symptoms. That's tough. And often our mental health in living with chronic illness, that comes into play because it can be not only isolating, experiencing and living with chronic pain and chronic illness, but also the impact of not feeling heard.

So again, here is a soundbite from my chat. to Katerina. This is just one aspect of one of the many different illnesses she has experienced, but have a listen and then I'll come back to unpack it a little bit. 

Katerina Vujić: I found out that it was Lyme disease. And again, I felt I felt a sense of relief in having a name to put to what was happening to me.

That felt good. I felt like I wasn't crazy, because I'm sure that this is also relatable to you and other people who are listening who are chronically ill. [00:10:00] When everything's happening to your body like this, and all these sort of amorphous symptoms like Brain fog and stomach pain and vertigo and whatever that you can't piece together and that seem unrelated, you begin to think that you're going nuts.

Teisha Rose: Yeah. 

Katerina Vujić: And, uh, you know, you might start listening to other people around you who say, Is it all in your head? And I, I fought back against that because I really firmly didn't feel like it was in my head. This was in my body. But, You get to a point of really being in the weeds of, of feeling so unwell that you start to doubt yourself.

And I think it's really important for anybody listening to know that, A, I understand that. B, it sucks, but it's okay. And C, I encourage you to, to really be open to what you're feeling in your own body and what you feel like you [00:11:00] know to be true. Um, because it often is. And you know your body better than anybody else  

Teisha Rose: So did some of that resonate? I know when I put part of that clip on Instagram a couple of weeks ago and I talked about it's not in your head, there was lots of comments because that is what sometimes we think. And I know I have, you know, some of the random symptoms, particularly with MS early on. Now I'm used to them, but early on I thought, oh, maybe, you know, I wasn't sure whether it was to do with MS or not.

And as I mentioned before, it has a real psychological impact when you do have these unexplained symptoms and this is when self doubt creeps in.

And it's really easy to start questioning yourself when there's no external validation. If that [00:12:00] external validation is missing, then we do. We start thinking, is it in my head? And then there's such relief when you do receive a diagnosis. And obviously it is a relief because now you think, well, I'll get the right treatment, but that relief is also because of the validation that you've been listened to, that your concerns have been heard.

So I encourage you, if you haven't listened to episode 56, listen to Katerina's story. It's an incredible story of her perseverance, of her being in some really, really dark places when she felt unheard and how she was able to move through that.

And for me, it's also, And this is what I talk about in my Healing Mindset course. It's when you, you [00:13:00] get to a place of hope. Hope is when you no longer are looking externally for validation. And of course, isn't, isn't about not looking externally for a diagnosis, but it's getting to this place where internally , we have this self confidence That we know our bodies, that we know when something isn't right and we're not second guessing that and we're telling medical staff or whoever's around us and we're not second guessing ourselves. So again, I could talk about this for ages, but as I did with Ronnie's story, where we talked about feeling powerless, this message in Katarina's story

is really about reminding you that if you're experiencing symptoms, that it's not in your head, And have that confidence that what you're feeling is [00:14:00] real and keep persisting in trying to find answers as to what's going on. But as Katarina did also start researching yourself as to how you can have an impact on your situation.

, if you're listening to this and you don't have answers, you are in the midst of experiencing all these different symptoms and you don't know what's happening, I want to share five things that might help you get through this period of time. One, trust yourself. Your experience is real.

Even if you don't have a name for what you're experiencing, that's okay. 

What you're experiencing is still real. Broaden your search is the second one. Sometimes the answers come from unexpected places. That's been a common thread with all of my guests, is if there aren't answers, try a different specialist, [00:15:00] see a different therapist, listen to another patient's story. 

Try natural therapies, you know, something that changes your perspective as to what's going on. Thirdly, document your symptoms. Keep a health journal and this will help you identify patterns that may not be obvious at first, but when you write down what's going on and you look back, those patterns emerge.

Teisha Rose: Number four, Find a supportive community and you notice I said supportive because some communities online or in person aren't right. Sometimes they're not a right fit, you know, sometimes they bring you down and don't help you. Uphold you or support you. So find the right community where you can ask questions and you can find out information and that supports your mental [00:16:00] health, doesn't bring you down.

And finally, reframe persistence as power, , because It's not wasted energy. If you keep trying and trying and trying and you meet all these different doctors and you spend all this energy, your persistence is you taking your power back.

And that's what I loved about what Ronnie did, as Ronnie wrote a letter to their neurologist. They didn't mind whether the neurologist listened or responded to that letter. But it was a process that helped them to reclaim control of their narrative. Okay, so hopefully this has helped a little bit. If you are feeling a little bit isolated, a little bit frustrated, a little bit powerless in this world of chronic illness, [00:17:00] in this world of unanswered, unknown symptoms,

Please, if you're struggling to get a diagnosis, know you're not alone. Your symptoms are real and you really do deserve to be heard. Always reach out if you are struggling, um, on Instagram at Hurdle2Hope with the number 2. You can DM me anytime. As I've mentioned a couple of times, the episodes in today's episode, episode 47, Meet Ronnie Morgan. Also episode 56, Meet Katerina Vujic both are really incredible stories they speak from their heart and really from a place of vulnerability. So have a listen. Otherwise, I hope you have a great week. And I look forward to bringing you [00:18:00] another episode of Wellbeing Interrupted next week. Chat soon!