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.

Am I an expert patient?

I became more aware of the phrase "expert patient" recently. I have heard it before but it had kind of washed over me without really sinking in, what does it mean, do I identify with the phrase? It turns out, it created quite a debate in my head......

I think the short summary of the answer to that question is "sometimes", but I do feel that a person who proclaims to be the "expert patient" needs to temper that feeling with views from others, particularly medical professionals. The language used is complex and I think that is why it has washed over me previously because it is complex and not something easy to put my finger on.

The view of "I am the expert on my condition" is of course entirely correct in principle. However, today I may be absolutely convinced that, say, I have extreme fatigue and that is the fault of low Cortisol. The answer is, therefore, to take an extra dose of Hydrocortisone. Maybe this works, maybe it doesn't. Let's say it does and I feel better, then what about tomorrow when the same happens again. We have to be 'expert' enough to know when our expertise runs out and we need help. To sit in front of a medical professional and say I am an expert is one thing, but caring for my health is a team effort and I need to listen to the medical view as much as they need to listen to me. When this team is working properly, I am in the best hands. There can be so very many reasons for fatigue (using this example) other than just low Cortisol.

Then, am I a "patient" all the time, or am I only a patient when I'm seeing a medical professional (keeping that as a very broad term on purpose, basically anyone at a GP surgery/hospital/medical establishment). My view is really that I am only a patient when I'm seeing a medical professional, not all the time. 

On a day to day basis I'm just me, Carl, I happen to have a condition called Secondary Adrenal Insufficiency, or Hypopituitarism, or even Hypoadrenalism. I did say the language gets complicated! Just to explain:

Secondary Adrenal Insufficiency, or SAI. I have no production of Cortisol from my adrenal glands for a 'secondary' reason, i.e. my Pituitary gland has malfunctioned, but my adrenal glands still function, just not fully.

Hypopituitarism. Hypo, meaning "under" or "below normal" and obviously Pituitary-ism. In other words my Pituitary gland is under-performing. In fact it no longer produces the signals for my body to produce both Cortisol and Testosterone. 

Hypoadrenalism. I have seen my condition described in this way, the amalgamation of the two words probably need no further explanation.

Then that brings me onto other language, if I am not a patient all the time, then on a daily basis do I "suffer" from SAI or do I just "have" SAI. This applies to all conditions of course, it doesn't bother me that much but I know it does some....

So where does that leave me potentially being an "expert patient" then? Am I, do I want to be? I think the answer is yes I am an expert, although I might not express myself in this way. Do I want to be, hell no! Nobody wants to be.

Everyone with a complex condition or conditions needs to advocate for themselves or have someone who can do it for them (family/friends etc). One needs to do the research to understand your own condition, tell people close to you about it and hopefully involve them in your care. Then you have some facts, some lived-in experience and maybe even someone who can help you voice all that.

I've rambled on for long enough, but I'm brewing another blog post on what being an "expert patient" might actually entail. Watch out for that one....