When I first got diagnosed and started on my anti epileptic drugs, I agreed to be part of a research trial, looking at the difference between standard and new anti epileptic medications to see which are most effective and which ones make the best use of NHS resources.
It had no real impact on me other than a computer randomly selected which medication I first started on. But as part of the trial every three months I complete a 24 page questionnaire which extensively looks at all aspects of my life and how the condition affects it.
It ranges from what medical treatment I have needed to receive and my physical symptoms to how the condition has impacted on my working life. A large proportion looks at how the condition affects my mental health. There are seven pages of comments such as "i feel some would prefer to avoid me", "i have little control over things that happen to me", "i feel cheerful", and I have to rate whether I strongly agree, agree, disagree or strongly disagree.
It is quite a time consuming process but if it helps with the study and has a positive impact on the services for people with epilepsy in the future this is only a good thing.
The questionnaire also makes me sit down and think about my epilepsy and the impact the condition has on my life, rather than trying to ignore it. So hopefully when I complete it today I will see some positive inprovements I have made over the last three months.
Sara