What does being a Patient Expert entail?

Good question!

My previous blog dealt with whether I identified with being an "expert patient" and I think the answer was yes in principle, although there was more to it than that.

Over the years I have had my condition, which is now 10 years since diagnosis, I have learned many things. But the thing is, even after all this time, I'm still learning more new things about my condition. Even things I have already learned may have changed over time, so whilst they may have been true, they may not be any more. Which is why being an "expert" is tricky.

If I have (say) brain fog today, or extreme fatigue, then this absolutely could be a lack of Cortisol (as I talked about in my previous blog). My body also fails to make any Testosterone, a symptom of very low testo is, guess what, fatigue. I'm being deliberately contentious using fatigue as the example, because there are SO MANY causes of fatigue. How am I to know?

So being an expert patient is trying to understand the situation you find yourself in and comparing it to your previous experience - is it the same, is it different, think to yourself - are there any possible other causes. Speaking to someone else can help, my wife always knows when something is up with me, often before I do. Are you a member of a peer support group, can you ask their opinion, what is their experience. An expert patient isn't just an expert themselves, they know when and where to reach out to others who can help, both peers and professionals and give them support.

What is going on with your condition? If you are trying to track a cause to an issue, make notes, make a diary of what is going on. When are you taking your medication, how much medication, what are you eating/drinking, what have you been doing during the day, are you sleeping normally, are you under any extra stresses.....the list of questions goes on. But make a note of them because despite you being absolutely convinced you know what you did and when, in 24/48 hours it all becomes a bit blurred if you haven't written it down, well it does for me anyways!

So being an "expert" is about knowing you, and also about knowing when your expertise in you has run out and you need help. It isn't an easy balancing act, because sometimes we don't want to ask for help, or we fear what the answer might be if we do ask for help. But asking for help is sometimes the only way and it is nothing to be ashamed of.