Accepting the Diagnosis - A hard task.

Accepting the diagnosis.

How can one accept such a life changing, shifting and altering condition? And everything else that it comes with? The stigma attached to FND is rife within the medical fields and within our society as a general, I have viewed posts of people sharing their experiences on social platforms to be met with "It's not a true seizure, you’re faking it and you need a psychologist." The reality is it's not a nice diagnosis to have, the physical symptoms are very rough to live with, but the societal treatment can hit you on a more emotional and deeper level. It hurts to not be believed, to be treated as if we are making it up for some kind of gain. We lose so much after FND jobs, finances, outings, dinners, socialising, spending time with the children, missed school events and at times it can feel like a disconnect from life itself; it’s all consuming and life changing.

 

It isn't an uncommon theme within the chronic illness community that they themselves have had felt the sting of stigma and assumptions, and previously some conditions were seen through the same lense as FND; meaning not real and of psychological origin and I’m sure this still happens. Eventually through more research and study they have found the cause of the condition. Some people that live with other conditions such as CFS and Fibro have had experiences of being misdiagnosed with FND later to find out what their conditions are. We cannot use FND as a diagnosis without full work ups and investigations.

 

FND sits under the DSM-5, which impairs healthcare, outcomes and framework within medical settings in my opinion.

Neurologists and Psychiatrists all have differing beliefs towards the disorder, no one seems to be on the same page and debates are had between both specialists, throwing us between both areas. It is believed FND sits between the both however both specialists will tend to refer back onto each other. A Psychiatrist will suggest a Psychologist and when seeing them they realise they are not equipped and refer back to a Neurologist due to the symptoms being body based and no mental health issues. It would feel like being the naughty kid that both parents don't want to deal with so you’re thrown back between houses, ‘too hard go there I cannot handle you’. That wasn't my experience as a child however it's a great analogy. And whilst this wasn't my experience I haven't been through the back and forth from providers and that's purely due to the lack of finances I have, but there is still this subtle theme when dealing with professionals. It's almost like FND is up for debate and people come to their own conclusions of how to treat and manage and I believe it may be due to the cause of FND is still 'unknown'.

It can also be also hard to accept the diagnosis due to its ties to mental health; it's not a requirement within being diagnosed anymore. However they can see the link between adverse childhood events giving one a predisposition to develop it later in life. So for myself it was easy to accept the diagnosis due to my past history, however for others with no past trauma nor mental health issues I can understand why it can be hard to accept, especially when it's put forward in certain ways via the Neurologists that diagnose and the fact that it sits on the DSM-5.

 

I don’t see FND to be purely due to my mental health, because it would suggest in my moments of complete calmness I would not have symptoms. I see FND as another beast just like Cptsd is, yes they may intertwine within my individual experience, however i see them as separate whilst also understanding that symptoms can get worse with the lows of mental health. If I looked at it as purely mental health based due to adverse childhood events the numbers would be far greater than they are currently.  I also understand that others don't have mental health issues so it's a disservice to them to base my stand point to be via the conversion lense, that's not fair to my fellow FNDers; I just perceive it as the brain and Neurological system being impaired due to individual reasons. Every human is unique and individual; our experiences are vastly different and should be seen and treated as such.

 

It can also be tricky to accept due to our belief system that we must see something physical on scans, FND is diagnosed via exclusion of other conditions but there are rule in signs, for example a positive Hoover's sign. It's more of a functional thing that they are looking for and that is done via testing the body’s reflexes. I think it's quite naive of us to think that science is at the level of all knowing, we know nervous systems are different and there are differences within the brain e.g. Neurodiversity. So we must accept realm of the unknown and that medical science isn’t as refined and complete as we may believe.

 

And for these reasons I feel that self-education is so important and advocacy, this confusion within professionals and settings can create a feeling of uncertainty and one may not believe in the diagnosis due to this, which in turn can delay treatment. The website that I was given after rehabilitation was a great starting point, as my cognitive functions improved I could read more in depth studies. It shouldn’t have been up to me to self-educate but it created a sense of empowerment.

In the best scenario people with FND would be referred to a local clinic within hospitals where we would have access to all clinicians needed. That would entail psychology, speech therapy, physiotherapy, exercise therapy, dieticians and occupational therapy. These places exist yet this isn't reality, General Practitioners and Neurologists don't refer to these places because they are unaware or they don't exist in areas. In some cases Psychology is only suggested this is dependent on their knowledge and bias as a clinician. The issue with this is the neural pathways aren't being treated; we need a team. This issue stems from one thing, the lack of framework within medical settings and it's harmful and leads to poor outcomes.

 

I was lucky enough that through my own self advocacy I was able to get the Outpatients Rehabilitation services via the public hospital and while I'm very grateful it was only for eight weeks. At my current managed state there is no point in attending, while still plagued with symptoms, they are managed in the sense of if my legs go, I sit and rest until they work a bit smoother. Or if I have a void out it will pass, I learnt to just allow the symptom and give it time to pass. A constant ebb and flow, wax and wane of symptoms is felt throughout the day. I also cannot do much in one day a restrictive balance between more rest periods than doing; I have just learnt to manage the condition.

 

So now I answer the question of how did i learn to accept my diagnosis of FND? Through self-education and having an open mind. It did help that I've lived a life where stigma was a common theme living with a limb difference and mental health so I wasn’t bothered much by the diagnosis or the fact that I was disabled; I already was. I noticed the more I accepted it and learnt about the individual symptoms that it made sense and I was more in the management mindset and befriending the symptoms and working with them and not against. I had to sit and grieve the former self and how much my life had changed in what felt an instant, I also had to let go of so many abilities and retire from the throne of doing to just existing. I had to accept my limitations and to vow to honour my body’s needs, listening in and respecting my neurological system. I had to reframe and relate it back to accepting my limb difference, if I could accept my impairment from birth I had to accept my new conditions. I also chose to see both sides of the hardship; heavy and the light. I can see how my new conditions threw me into self-discovery while still acknowledging the hardships themselves.

 

There are things however I will not accept in relation to FND and that is the systemic poor care, the lack of any real framework creating a clear accessible pathway. I will not accept the way it's taught in medical school and a lack there of. I will not accept that if it's seen within the conversion lense that it makes it null and void to get help. I will also not accept the lack of awareness within the community, I myself was previously working within the disability sector and I thought I knew of every condition and disorder, I had never heard the words FND. We are aware of conditions such as MS, CP, Parkinson’s, we are also aware as a society of anxiety, depression, bpd; FND falls short on both fronts.

 

We need acceptance within our communities via awareness and advocacy, our medical fields need to create framework and for FND to treated for what it is a brain network Disorder, with empathy and fostering trust and safety within patient and clinician relationships. Without these things people newly diagnosed with FND will find it hard to accept such a life changing condition.