Thursday 25 March 2021

UK FND Awareness Day: Living with a misunderstood illness

Today is UK FND* Awareness Day so I'm trying to shed some light on this, an illness that I have which over the years I have found to be poorly understood even by care professionals.

There are many many different symptoms to FND as it affects the whole brain and nervous system in the body. As a result it affects each person so uniquely, though there are some key symptoms but even these vary from person-to-person. FND is also an ever changing and fluctuating illness and it is highly unpredictable. When I've spoken to others with FND they have found like me that their FND changes over time just like I have found.

How I explain FND

How my FND started

I developed FND at University; I was doing well with my studies but I started to experience some symptoms which I just put down to being overworked but then all of a sudden I started to have non-epileptic seizures. Since then I live with a multitude of FND symptoms which severely restrict my life; not only affecting my physically but socially and emotionally too.


FND is an invisible illness both externally and internally an which adds to how misunderstood the condition is. On the outside I look fine - unless you see me mid non-epileptic seizure or sat in a wheelchair, but most of the time I 'look fine' when I feel far from it. Internally I look fine too as there is no real tests for FND. Blood tests and genetic screenings come back fine as do things like CT or MRI brain scans. 

However research is finding that on an fMRI scan FND does show up*. There is also something called the 'Hoover's Sign' which can can be used when someone has functional weakness/paralysis - this test was used on me when I was diagnosed with FND.

Living day to day

Living day to day with a misunderstood illness can be difficult sometimes. Like for example I may get asked what is wrong with my legs and often people find it hard to understand that my legs are fine but it's my brain that is the problem. Or when I'm asked to explain what my illness is and trying to explain what FND is (see my YouTube video above).

The daily challenges of living with FND are difficult to due to the unpredictability of my illness as the symptoms vary so much and every day is different. This also makes it hard for other people to understand as I may be having on of my better days and using one type of mobility aid one time and the next time I see them I might have different symptoms and be using a different mobility aid.

The main challenges

I would say that the main challenges of having a misunderstood illness like FND is that is can be hard for professionals to understand what to do with regards to dealing with my illness.

As well as that I've had some awful times with care professionals misunderstand what is FND is. As a result at times they have made very wrong assumptions; often based on out of date knowledge which has led to me receiving poor care and at times mistreatment. For example I have been assumed to be faking, manipulative or feigning, attention and drug seeking, or my symptoms being factitious.

References & Helpful Links

* FND on an fMRI scan