I think sometimes people think that getting test results back as anything but normal is a bad thing. Which, if you’re healthy, I suppose it is. But when you’re already feeling ill, it’s a relief to get ‘bad’ test results because it means that there’s actually a reason for you feeling so poorly, and that means there might be a treatment plan which can help.
When you go backwards and forwards, doing test after test and experiments and retests it’s really demoralising hearing ‘your tests came back fine‘. You start to think that you’re ‘making up’ the problem, like you’re not tying hard enough to ‘get on with it’ and you start to blame yourself, even if you’ve done everything right.
So you feel disappointed when nothing shows up on a scan or a blood test. And then you catch yourself and think ‘what am I saying, I don’t actually want to have an illness, do I?’ No. Of course you don’t want to be sick. The fact is you’re sick already, you just don’t know why or how (yet). Which can be a lot more scary a prospect than seeing a bad test or scan result or being diagnosed with a ‘scary’ illness- something is slowly killing you, but no one knows why. This is exactly what was happening to me prior to my diagnosis of Adrenal Insufficiency. I felt relieved to actually have a diagnosis.
Test results mean you know what you’re dealing with. You know how many soldiers the other side are sending into battle, and you can work out how many of your own you need to get out of reserve. Don’t get me wrong, it doesn’t make the battle any easier, but knowing what you’ve got, even if it is horrible, means you know you’re at war in the first place. Otherwise you’re in a Battle of the Somme type tactics where you’re at risk of pushing all you’ve got energy wise in the first 30 seconds, and then not being able to sustain it for the months or even years you actually need to.
Test results also ‘legitimise’ your illness to other people. Not that you should feel like you need to, but it means other people should at least be able to acknowledge that it’s actually a battle and it’s not ‘all in your head’. Test results mean that something is at fault besides you yourself, and other people have an easier time accepting that. The problem is, not all illnesses have easy diagnostic tests.
I haven’t had any new test results back. There’s stuff going on with my endocrine system that test results don’t or can’t show. I have had my repeat Synacthen tests back though. My cortisol production is ‘flat line’, to use the words my consultant used. You can’t survive without cortisol. This is not new news, but, 2 years since diagnosis, it’s now highly unlikely (less than 5% chance) that my adrenals will ‘wake up’ and start working again. Which means I’ve got a very tricky to manage, life-threatening condition for the rest of my life.
It’s not nice getting bad test results. But the easiest part of that consultation was actually the bad test results. Test results you can work with. It’s the unknowns which are scary.