How to be a FND Diamond!

I was listening to an interview with Lyn Christian, author of Soul Salt the other day. Lyn was very insightful with a lot of information, and I am looking forward to when the book arrives. But one comment stood out to me: “You’re just a beautiful big diamond with many facets.” This got me thinking into the deep of the night – is FND the diamond and I am just one of it’s facets? Or, am I the diamond and FND is just a facet?

Once you have a diagnosis, it is easy to identify as the diagnosis or the disability – “I have Functional Neurological Disorder (FND), or I am a person with FND.” This title shapes and can easily define you. It can easily become a focus. We do it ourselves, both my 9-year-old and myself have FND. It frequently presents itself especially when a symptom is deciding to remind us. The focus becomes FND or at least the symptom and not the person who is experiencing it. The symptoms of FND becomes your identity as the symptoms feel like they are taking over your world. I see the same behaviour in Facebook Support Groups, when people are asking about a symptom they are experiencing. But is that who we are – a cluster of symptoms?

Don’t get me wrong, I completely understand why people, me included, reach out to internet forums. Because let’s be real here. The typical experience with a medical professional is: “You have FND and there’s not much we can do, so, here’s a website to find out more” right before you are charged the consult fee and are never seen again. Then we are left to navigate symptoms and treatments on our own. Quickly learning how disabling FND can really be. Obviously, others have had a much more positive experience, but this does seem to be atypical. We need solidarity, someone to bounce our concerns or symptoms to.

Symptoms that we experience can change and/or intensify. Over the years, I have experienced seizures, numbness, pain, fatigue, weakness, mobility issues, dizziness, cognition issues, vision and hearing changes and speech problems. My daughter also experiences similar symptoms. And these symptoms can be downright scary – regardless of how old you are! Of course, I want to know if others have experienced similar because a trip to Emergency or Doctors often results in more issues than it solves. So where else can we discuss symptoms? But I also wonder if this may be more harmful, especially if we ONLY focus on symptoms.

Trust me, I know symptoms easily win the focus award. But a symptom is just a facet of who we are. I cannot separate FND from me, because like my skin, hair or nails, it is a part of me. I do have FND and I accept that. But I am also ME with my own identity, and thanks to Lyn to remind me that it is only a facet – FND does not make a whole diamond – I do!