The last few weeks have been punctuated with rejections and successes. However, the most unexpected refusal was that of my blue badge. My FND symptoms only started in November, but they have resulted in me currently having to use a wheelchair, both inside and out. I was therefore not expecting a refusal for my blue badge. This goes to show how naive I am, and how much I still have to learn about the system.
For many people a blue badge is a passport to living, not only in the city of Bristol, but much further afield. Without it, basic everyday tasks such as going shopping, doing the school run, using sports facilities to undertake physio – like activities, attending hospital appointments, or taking children to their various activities become so much harder, if not impossible. What are people supposed to do while it takes the council months to reject a valid application? How are they supposed to live their lives? This is just one example of the crazy bureaucracy that disabled or chronically ill people have to put up with, taking up so much of their valuable energy that they are unable to do anything else.
I wonder how much it has to do with the actual diagnosis that we have. Some diagnoses of well known conditions are known to result in both permanent and substantial disability. However, there is so little known about an FND diagnosis, that it is impossible for anyone to tell whether it is a permanent diagnosis. Who can tell whether a tremor will last a life time, when the molecular biology behind it is unknown? It is hard for doctors to say that something is permanent, when all the clinical advice says that it is potentially reversible. Consequently, we have to claim something that nobody knows to get the resources that we desperately need to live our lives even vaguely ‘normally’.