What I Wish I Knew When I First Got Diagnosed With FND

05 Sep 2026 Aussie Girl

1

I was diagnosed with FND 2 years ago, with symptoms first appearing 3-4 years ago. I am a female in my 20s. Here are a few things I wish I knew when I first got diagnosed (these are all just my opinions based on my experience, they are not facts)

1. clinicians who are "well read" on FND are sometimes the most harmful. While I have had a few great clinicians who had years of experience with FND patients and were able to help me, by far the most damage to my wellbeing was done by arrogant "experts" who thought they had a perfect understanding of FND and wanted to manipulate my experience to support their narrative (namely, insisting that my symptoms were psychological / for secondary gain). I have never felt crazier than I did when dealing with experts who claimed a) I was in full control of my symptoms, or b) symptoms were purely the result of my emotions. In my experience, working with clinicians who don't know much about FND has been safer because they are usually willing to listen and learn.


2. avoiding triggers shouldn't always be discouraged. Much of the FND literature tells you to "avoid avoidance" because there is the assumption that patients are avoiding triggers out of fear, and therefore lowering their tolerance to particular things. Graded exposure is almost definitely a useful tool in the long run, but perhaps guidelines should be more nuanced and recommend avoiding exposure when an FND patient has particularly low capacity and exposure is highly likely to cause a flare up. Otherwise it seems a little bit like telling someone with the flu to go to the gym when rest is probably what their body needs.


3. "accepting your diagnosis" is not treatment, and further investigations should be permitted. When I was diagnosed with FND, I was relieved because it wasn't MS or MND. I quickly accepted the FND diagnosis and read up on the condition. I learnt that a lot of FND patients have comorbidities, and POTS was a very common one. Because POTS was very easy to test for, I thought it was only appropriate to want to rule it out. When I brought it up to different FND "experts" who were treating me, the overwhelming response was "why are you trying to get a new diagnosis? Why can't you just accept you have FND? The longer it takes for you to accept you have FND, the longer it will take to recover." (Ironically, they would have been very encouraging if I was trying to get a mental health diagnosis) Needless to say, I didn't persist in asking for further investigations because I wanted to get better so I listened to them. Fast forward over a year later, an unrelated specialist decided to test my heart rate and suspected I had POTS, and I was referred to a cardiologist who later confirmed it. Thus, the initial messaging from the FND "experts" had essentially prevented me from receiving advice/medication to manage non-FND symptoms for over a year. The failure to address comorbidities put greater strain on my body, increasing my vulnerability to FND symptoms at the time.


4. triggers are anything that can overwhelm your brain, not just emotions / trauma. When I was first diagnosed, the "experts" kept trying to convince me that my triggers were my emotions / past trauma, which I had a hard time accepting because my symptoms were first triggered by intense pain, and I didn't consider my life to involve anything sufficiently traumatic. I was told to try to identify my triggers, especially emotional triggers. So I tried to notice whether my emotions were triggering my symptoms, but instead I noticed that big triggers were loud noises, bright lights, pain, and fatigue. Excited, I told my treating clinician that I had identified these different triggers, expecting them to say "that's really good to know!" Instead, they chastised me, saying, "no. Those aren't your triggers, but because you think they are, you are going to be a self-fulfilling prophecy. So now your symptoms will get worse when you're fatigued because that's what you're expecting to happen, even though it wouldn't otherwise happen." I was speechless. You can see why these "experts" made me feel so crazy...


5. hormones are definitely a factor for females. Anecdotally, many women with FND have noticed symptoms get worse based on their hormones. In my personal experience, my FND symptoms were first triggered by absolutely unprecedented period pain which immediately caused longterm gait issues. For some reason, I have faced so much pushback by "experts" who don't want to accept that this could have been a significant trigger for my FND because they would prefer it if I told them my FND was triggered by a juicy emotional trauma instead.


6. supportive equipment is not harmful. The physio recommendations for FND recommend against using mobility aids. I was using a walking stick to reduce how often I fell down but, of course, the FND "expert" bullied me every time I used the walking stick, claiming I was training my brain to need it. Using the walking stick helped me save so much more energy than walking without it. I used it every day for over a year and, randomly, my walking started to improve to the point that I didn't need to use the walking stick anymore. Other things like sunglasses and noise cancelling headphones help me so much when I go out because they reduce sensory fatigue (things I never needed prior to FND).


7. safety is more important than normal movement. Goes without saying, but some FND experts would rather you move 'normally' as opposed to safely.


8. taking it easy. In my experience with therapy, less is more. I had the most significant reductions in my physical and mental capacity when I was engaged in intensive physical therapy. I attribute significant improvements to my symptoms over the past 8 months to the fact I stopped doing intensive physio exercises, and started using a wheelchair on occasion. I believe this allowed my body to get the rest and recovery it needed, which it was unable to do while I was engaged in constant therapy. I have recently recommenced physical therapy because I now feel strong enough that it might actually be beneficial, but back when I was first diagnosed, I wish someone had recognised that I probably did not have the capacity at the time to engage in such an intense physio regime.


9. false expectations. I wish I had been given a more balanced perspective on recovery. I wish the emphasis was on learning to manage your symptoms to improve quality of life, instead of randomly waking up one day FND free. Instead of being told some people make a full recovery and others don't, I was told that I needed to believe I would get better in order to get better. This was another thing that made me feel crazy because, when I kept getting worse and worse, it created irrational doubts like "am I not getting better because I don't truly believe I will? Is this my fault?" Of course I knew that was a very silly thought to have, but the "experts" had continuously planted those doubts in my mind. My clinician was very obviously annoyed at me for not getting better despite doing everything they said, because they initially thought I would be easy to "fix".


10. trauma. In my perspective, the only traumatic thing in my life has been becoming suddenly disabled, and the emotional and physical distress I experienced as a result of FND and the healthcare system. It is quite ironic because the clinicians have been so eager for me to identify a childhood trauma that might explain why I ended up with FND, only for them to be contributing to the most traumatic experience of my life in the form of medical trauma (even so, it hasn't been a hugely distressing trauma as I am still willing to seek out medical care. But it is the worst treatment I have ever experienced). I just hope that the treatment for people with FND in the future will be substantially better than it has been in the 2020s.


11. YOU KNOW YOUR BODY BEST

Thanks for reading. Hopefully this might make navigating FND a little bit easier for someone else.