Can our beliefs impact our recovery of chronic health conditions?

Me in 2013. Looking absolutely fine but feeling like a mess.

I recently listened to an episode on Dr Rangan Chatterjee’s Feel Better, Live More podcast, all about how medicine has gone too far and too many health struggles are being over diagnosed. There was a lot of really interesting concepts in this podcast and a lot that I agreed with in principle, but we would need a lot of changes on a societal level to make the kind of changes needed to prevent so much over diagnosis. Anyway, the concept of how our beliefs around our health conditions impact on our experience really resonated with me, so I thought I would share my thoughts and experience related to a chronic health condition that I have suffered with and how my beliefs impacted on my recovery.

Before I start, I would just like to acknowledge that this is an incredibly emotive and personal subject and everyone’s experience is different. I do not want to undermine anyone else’s experience. I understand that not all illnesses are recoverable and that mindset is only a small part of the recovery process. I do not want to offend anyone with my story so I want to be clear that this is just my experience. Take what you want from this, and leave what you don’t.

Here is my story…

You know that feeling that you get when you get off a rollercoaster or a boat, where you still feel like you are on it even when you are on firm ground? I have never liked that feeling and it has always taken me a while to steady myself again. In March 2013, my boyfriend and I went to Venice on a wonderful trip that I had wanted to do for ages. We had a fabulous time and Venice was everything that I wanted and hoped it to be. However, after lots of boat trips during our trip, I found I was still dizzy and nauseous a month after coming home. I was feeling very sorry for myself, as it was impacting my day to day life and my mental health. This was in complete contrast to how I was actually feeling about life at that time. My then boyfriend and I had actually got engaged in Venice, so I was on cloud 9 in so many ways. Except for this awful dizziness that was almost constant. I went to the doctor who said it was a virus and that it was vertigo. I disagreed with him as I hadn’t been at all unwell and explained that it had started immediately after being on the boats in Venice. I agreed to take the anti-motion sickness pills he gave me but when 2 different types of these didn't work, I went back and he agreed to send me to a specialist.

I went to see a Neurologist and I was incredibly lucky that the specialist had knowledge of a really rare balance condition that I was subsequently diagnosed with. It is called Mal de Debarquement Syndrome (MdDS) and the tell-tale sign that you have this condition is that your dizziness goes away when you are moving. So, for example, when I was in a car I felt normal but when I was still I was really dizzy. This is unlike all other balance disorders, where any movement tends to make the dizziness worse.

I was told there is no cure and there isn't a great deal known about the condition. Excellent – that’s always what you want to hear isn’t it! The only thing they could suggest trying is physiotherapy in the form of balance exercises. However, the symptoms would most likely go of their own accord and that actually the best thing I could do was to try my best to ignore the dizziness and effectively tell myself that I had no reason to feel dizzy. The brain sort of needs to reset itself, as it is still overcompensating thinking it is still on a boat.

I came home from that appointment and immediately googled MdDS and joined a support group and freaked myself out with stories of people suffering for years and years and never making any progress. However, I did feel better because I had a proper diagnosis. For the few months prior to the diagnosis, I actually thought I was going mad. To the outside world I was absolutely fine. I showed no signs of any kind of illness but on the inside I felt like an absolute mess. I would push myself through a day at work trying my best just to keep going but I would come home and fall to pieces. I was massively struggling with low mood and anxiety that this was my life from now on. I felt validated by having a diagnosis but I felt worse because it is such a rare condition with no cure and the possibility of living with it my whole life made me feel so hopeless.

I went to my first physio session and all the time I was there I was just thinking to myself, they haven't got a clue what they are doing. They are just trying anything even though there is no evidence that it works. Even the physio said she had only worked with 1 person with MdDS before and she didn't believe it made any difference. The one thing that really played on my mind was what the doctor said about it being more likely to go of its own accord and that it was more likely to go if I did my best to ignore it.

Effectively, what he was saying was the more I thought about it, the more 'fuel' I would be giving the condition and therefore the worse it would be.

The more I thought about this, the more it made sense. The times when I was at my worst was when I wasn't busy and I ended up concentrating on feeling dizzy. I have always been a massive believer that your mind is a very powerful force and the more thought you put into something, the bigger it becomes. From my training as an Intuitive Psychology Coach I now know this as ‘Where attention goes, energy flows’. So, by this same principle, if you choose to not put your attention into something (e.g you ignore it) then your energy doesn’t go into it. I started to hope that by this logic I could fool my brain into forgetting the dizziness.

I stopped going to physio and I stopped looking on the Internet and the support group. The initial feelings of validation that I got from the support group started to change into a constant reminder of how impactful this condition could be if you focus on it. I mean no disrespect to anyone who finds themselves in that place, I guess I just hope that this perspective may help you to see that what you think is helping you, may also be keeping you stuck. I found that whenever I gave it any time or thought my dizziness would get worse. This proved itself when I found I was feeling better and only having moments of dizziness during the day rather than continuously, and I had a follow up appointment with my consultant. For about 2 weeks before my appointment and about a week afterwards I found my dizziness got a lot worse, as it was obviously on my mind because of my consultant appointment.

I made the conscious decision to keep 'ignoring' my dizziness and I started feeling much better again. All in all, this episode of Mal de Debarquement Syndrome lasted about 10 months. It was an incredibly difficult 10 months of my life, and at times I was in a very dark place. It wasn’t just a little bit of dizziness, it was the impact on all areas of my life and the fact that it was so continuous and exhausting. Mal de Debarquement symptoms also include brain fog, headaches, fatigue and feelings of depression and anxiety. All of which I experienced. I have also have a longer term side effect of tinnitus, which I also try to ignore as much as possible.

The reason for sharing my story with you is to offer a perspective that may be controversial but is one that has genuinely helped me.

Our minds are phenomenally powerful and you can choose to harness that power so that it serves you. You can choose where your attention and therefore where your energy goes.

This concept is further backed up by the Placebo and Nocebo effects. I have always hugely believed in the Placebo effect but I have only recently come across the Nocebo effect, but both of these principles make so much sense to me and are proof that our beliefs can massively impact our outcomes and our recovery. I do believe that having a diagnosis can be beneficial but it can also be detrimental if you get stuck in a belief of how your diagnosis is limiting. My invitation for you on this is to simply ask if your diagnosis or beliefs are serving you or keeping you stuck in your limitations.

I believed that if I ignored my dizziness, that I would be able to reset my brain. I don’t know what caused me to recover in the end but I will continue to believe that this belief helped with my recovery. Especially as MdDS is something I will have for life and could return as it is  episodic. I need to maintain this hope and this belief that my mind can impact my recovery and I will continue to do this.

If you are experiencing chronic symptoms there is a lot of evidence that shows that working with your nervous system and the power of your mind can be hugely beneficial. I am no expert in this but I am always happy to talk about my experience and what I have learnt.

If you would like to listen to the podcast that inspired this blog post, you can listen on this link;

https://drchatterjee.com/why-medicine-has-gone-too-far-the-problem-with-getting-a-diagnosis-why-early-detection-is-not-always-a-good-thing-with-dr-suzanne-osullivan/