I recently had the opportunity to be a case study for the FND rehabilitation course I took part in. It felt great to be part of the education for other hospitals, helping to teach other medical professionals.
One of the questions that I was asked, really stood out. What advice would you give to those dealing with patients with FND? My answer was simple. Show them that you believe them and that you want to help them. Too often, I hear horror stories of the way fellow sufferers are treated. This is mainly due to a huge lack of knowledge and understanding of Functional Neurological Disorder.
The symptoms experienced vary but although they’re not caused by disease, they are very REAL. I also believe that in order for the treatment to be successful, the pt must believe that their diagnosis is correct.
When I was given the diagnosis of FND back in 2013, I had never heard of it. Neither had anyone else. Try to imagine how that feels. Your life is crumbling around you, you’ve lost control of your body. Then, they hit you with a illness you haven’t even heard of. You can understand why people think the doctors have got it wrong. We are a generation of Google Doctors. If you Google the symptoms of FND, you will find that they are pretty much the same as that of MS.
The only real difference in symptoms between MS and FND are the non epileptic seizures. However, the tremors can be similar to the NES. So, I think you can see why patients can question and disagree with their illness.
When I began my FND rehab, I was fully on board. I was sure that my diagnosis was correct. I believe that this is really important. If you think the doctors are wrong, the chances are, the treatment won’t work because you’re not ‘on board’. At the start of the course, the MDT (Multi disciplinary team) teach you about your condition. This is so important. Once I understood what was actually happening with my brain, everything, including my original decline in health, started to make sense.
If you have recently been diagnosed with FND, please know that you are not alone. There are many support groups and charities out there to help you. If you’re not getting the help you need, fight for it. I know you are probably exhausted beyond belief and feel like your life is over. Trust me, I’ve been there. However, if you delve deep into your mind, you will find that fight. Yes, there’s no cure but there’s treatment out there that can help. You should not be ‘dumped’ and left to suffer on your own. I am happy to point people in the right direction, if I can help, please ask.
It’s been 28 days since my last seizure which is the longest time ever. I am still experiencing other symptoms but out of all of them, the seizures are the worst. What is different now is that all my suppressed memories are at the forefront of my mind. My body isn’t having to release those emotions. I’m having to gradually process them. It’s shockingly difficult but I’m working through it. The days of hiding away from my trauma are gone. This is hard but I’m strong and I’ve got this. The support from my wonderful boys and Mr Right, helps me to get through each day. There can be miracles, when you believe.
I’m busy trying to find the end of the rainbow and thank you for following my journey.