A painful post to write 'Are you making it up?'

Before we begin I just want to share a disclaimer, I am by no means a medical specialist, neurologist, physiotherapist, or neurophysicist. I have however had the painful process of living through Functional Neurological Disorder/Fibromyalgia.

I experience pain every day and navigate my way through an invisible illness. I've tried not to let it overcome me but some days are better than others.

I’ve had comments like “But how can you still be ill, it’s been a long time”, “why not sleep earlier than if you are tired”, “Are you making it up.”

It has been a tough time and even though About M.E. gives me the purpose I do have to look at the traumatic experiences I faced. I don’t always switch off but I am so grateful for the support I have faced from strangers.

The inspiration came through the day I began recovering. I no longer experienced involuntary movements, NEAD, and started to advocate for others who were diagnosed with FND. The fact that some ‘specialists’ become excited by the term functional because it won’t technically cause any structural damage can be disheartening. You experience the same pain but are made to feel like you should be grateful.

So where do you go for support? I joined groups that know what it’s like to have FND and Fibromyalgia. You can see more resources here. But please do always seek medical attention.

There’s not enough information about FND across the internet or enough support. However, I have found people to talk to in the US, Australia and also started a group in England (predominantly Sheffield) for support. Sometimes it’s just a case of “Yes me too” when you talk about how you’ve been treated.