All your tests came back normal!

I know my test results are back. I can’t bring myself to go to my GP surgery and ask for them. Not just because at my surgery you need special written permission from your GP to get printed copies of your own test results (because of “data protection” according to the reception staff) and instead must have your results read to you from a screen by a receptionist with no medical training.

No, that’s not why I’ve been unable to take myself to the Surgery and ask for my results from the latest battery of tests my bodily fluids have been subjected to. No. I’m afraid of the results themselves.

I’m afraid that every single last test result will be “normal”. And the receptionist will smile at me and be unable to understand why I can’t smile back and instead make a doctor’s appointment for as soon as possible and just leave.

And why wouldn’t I be happy to hear that my test results all came back “normal”? Surely that means I’m well and okay? Well, no, actually it doesn’t.

I’m chronically ill. This means that I’ve been ill for a very long time and my doctors don’t expect that I’ll ever truly be well again. I’ve been outright told by my GP that we’re past the point of looking to “cure” me and are just trying to work out what illness I have in order to have a better idea of how to manage my symptoms.

So those “normal” results represent to me a dozen or so different educated guesses from my specialist that could have been what is wrong with me but weren’t. They represent months and years of further searching, the fact the phlebotomy staff are starting to consider me a “regular”, the lasting uncertainty about what my body is doing and the ever decreasing chance that maybe, jut maybe, the illness that has taken over my body is something for which there is a cure.

“Normal” test results don’t mean I’m well, they mean I’m still ill and no one knows why. “Normal” results don’t mean I’m not in pain – they mean the pain relief I have so far is still a guess at what might help. “Normal” doesn’t even mean that my illness isn’t deadly or progressive – it just means a great big We Don’t Know.

I try not to but every battery of tests I think that maybe, just maybe, this time will be the time that instead of ruling loads of stuff out, we finally get to rule something in and say “We know what this is now; we know what to do.”

I’ve written this because there may be chronic ill people in your lives who dread the “normal” test results and like me feel like crying when they hear them. I’ve written this because some people behave like those “normal” test results mean the illness has gone or was never there to begin with. Whilst that might be true for many people, for those with chronic illnesses such test results mean more tests, more waiting, more time living with symptoms that are unexplained , more uncertainty about the future.

That’s why I am afraid of my test results. I want to know what’s happening to my body and why and what happens now. Each set of tests I’ve done so far has raised my hopes that this uncertainty will soon end and each time those hopes have been dashed by a smiling receptionist saying “Good news! All your tests came back normal!”

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2 thoughts on “All your tests came back normal!

  1. I’ve been lucky to have receptionists who have observed the number of tests being taken and read that information as “There’s something wrong here, we don’t know what.” and been more tactful about it; they say “All the tests are clear, so you’ll want to make an appointment with the doctor now.” as opposed to “All the tests are clear – go away and enjoy your perfect health!”

    Something that might help a little is if you go prepared with the honest statement, “I don’t know how I feel about that.”

    So whatever happens, the receptionist will see that any jubilation on their part is unwelcome.

    Best of luck getting your results. I hope the tests have flagged up something simple and fixable, but if not, try not to despair. Some diagnoses are a long time coming.

  2. I completely know where you’re coming from. I was bedbound for 9 months and all my tests came back normal. I’d cry every single time because I was so desperate to find out what was wrong with me, to have the hope that something could be done. Then I found out about lyme disease online. My GP didn’t have a clue about it and didn’t know that a negative test result doesn’t *at all* rule it out. So I went to a private clinic and got tested with a better test, and I got a POSITIVE result. I cried for 3 days straight with joy at having a name for my disease and hope for sucessful treatment. 6 months after the start of treatment I’m starting to get my life back.

    Never give up hope. x

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