In 2009 I was diagnosed with functional neurological disorder (FND). The symptoms, including severe and uncontrolled twitching and spasms, came from the body not functioning because of faulty brain signals. There were no structural changes to be seen on a scan.
I had a diagnosis, but whilst I now had a name for it the path back to good health wouldn’t be easy. Had I been diagnosed earlier – before I’d found my own way through – the hospital would apparently have provided occupational therapy, psychiatry and physiotherapy. By the time they told me what was wrong, I was already sorting myself out by other means. Happy for me to continue on my own path, they discharged me.
The journey to diagnosis had been highly stressful. If I’d been told from the offset what was wrong, then I doubt it would have got so bad. For me, uncertainty bred anxiety and depression, and this in turn made the FND worse. The NHS is good at ticking things off lists and, of course, this needs to be done. Many doctors admit that they are good at treating illness but often can’t help people who are unwell with something that is not adequately understood. Still physically in crisis, the doctors left me to wait for this glitch or imbalance to evaporate.
I am sometimes contacted by people who have been diagnosed with FND, and are not receiving adequate care and support via the NHS. Things are improving and there are some excellent consultants and departments doing brilliant work, but sadly others are still left to go it alone.
So, here is my quick guide to helping yourself whilst you wait for support:
- Check out these excellent online resources – neurosymptoms.org and FND Hope. They will help you get your head around your diagnosis. I found it important to try and accept the diagnosis.
- Find something to give you a break from the negative thoughts and the worry you will have about your situation. When I was ill I went for a walk every day (not easy when walking sets off the symptoms) and told myself I had to take one good photo every day. This made me really absorb myself in nature for a while, which I am sure helped me.
- Accept help if it’s offered, and be specific about what you need.
- If you have budget available consider alternative therapies. I had acupuncture and cranio-osteopathy which gave me regular appointments with practitioners who cared and supported me in way which the NHS team couldn’t. Anything which relaxes you and makes you feel more in control has to be a good thing?
- It’s also good to consider talking therapies. I found counselling invaluable both in terms of offloading emotions I’d been holding onto for years, but also in coping with being off work and on a very uncertain journey with my health. NHS waiting lists can be long, but there are other avenues which you can find out about on the MIND website.
You can find all this information and much more in my book The Cactus Surgeon: Using Nature to Fix A Faulty Brain which is on sale now!