The expert patient

Living with a chronic illness of any sort is tough. It infiltrates every aspect of your health and your life. There is only one person who can truly define the impact that this illness has on your life… YOU! No doctor can, not even if they suffer from the same illness. We all experience cluster headaches differently, our illness varies, our bodies vary, our work, family, relationships etc... are all unique and we all live in different parts of the world where life is different.  

In the UK there is an expert patient programme. Courses you can take to make YOU better equip to handle your condition and the impact it has on your life. I support this 100%. With a background in health psychology I strongly believe that we are the experts and we should be empowered to know all we can.

In the case of cluster headaches, the medical information is limited for the vast majority of doctors, It’s a bit of a mystery to those who are experts in the condition! So faced with a GP or emergency doctor who doesn’t know anything, or very little about CH, what do we want? I certainly don’t expect them to excuse themselves to go and read everything ever written about CH. All I ask is that you respect the fact that I know more about my illness than you do.

I met a new GP yesterday, I’m new to the practice and getting to know their level of experience with CH patients gave me a lot of anxiety. I never was an anxious person, and even to me it seemed ridiculous that swapping GPs was such a big deal, but when they are your first port of call and your day to day support, it really matters. However I realised yesterday that it doesn’t matter what he knows, the fact that he asked me about each of my meds and their impact, how I was coping right here and now on that day and what could he do to help. That’s what counts… doctors who are willing to admit they are not all seeing and all knowing, doctors who appreciate you are the expert and doctors who care. It makes this journey through hell easier.