Why do the tests keep coming back normal?

WHY DO THE TESTS KEEP COMING BACK NORMAL?⁠

Imagine you’re feeling unwell. You’ve waited and waited, the tests finally come back in and the receptionist cheerfully announces ‘they’re all clear, no follow up needed’. There is nothing more devastating than feeling your body at war with itself only to be told there is nothing showing up on the tests. But why does this happen so often with chronic illness?⁠

Tests aren’t always reliable⁠

Something doctors rarely mention is the fact that some tests fail to show you’re sick. They are only accurate ‘most’ of the time. ⁠Often you need to combine other symptoms with the tests to get a proper understanding. ⁠If you’re lucky a doctor might offer an alternative test that can look for results in a different way, but unfortunately this doesn’t always happen.

Also, what is classified as ‘normal ranges’ might not be normal for your body. ⁠Often, an average of tests is taken to create ‘ranges’ that allow us to work out when someone might be sick. But, as we all know, everybody is slightly different so sometimes even though the test says you are fine your body knows different. ⁠This can affect common diagnostic calculations including temperature, blood pressure or pulse for example, leading doctors on a false trail.

We are limited by what science currently understands

Research takes funding and if it isn’t being done, or even if it is, we don’t always know what we don’t know. ⁠Doctors and specialists can try their hardest but they’re limited by the resources, knowledge, experience and training available to them. Don’t lose hope though! The medical field is always evolving with breakthroughs happening all the time. Unfortunately, this means the tests we need might not be available yet, but progress is always happening.  

Find someone who will listen

You’ve heard the stories, 10 years to get a diagnosis for some chronic conditions and in the meantime that’s a lot of doctors and tests to go through. ⁠It can feel incredibly disheartening and like you’re not being believed. This feeling can be made worse if friends and family around you accept the test results on face value and assume you’re fine because the tests said so.

You don’t have to accept this. Keep looking for people who will actually listen. The best way to do this is to find the charity that is dedicated to the condition you have (or think you might have) .They often have lists of doctors who specialise in that condition and forums of other people going through the same thing. ⁠Communities like these can help you understand your symptoms and how they link up, offering first-hand insight into conditions. This is particularly helpful with rare and little understood conditions that your first line of medical care might not have had extensive training on. They will also usually have resources for family and friends to help them understand the condition better.

Don’t give up! ⁠

You know your body best. Don’t let anyone tell you otherwise. ⁠You know if something isn’t right. Try keeping a record of symptoms and test results to help you spot patterns in your health that might prove useful in future appointments. Take a trusted friend or family member into appointments if you feel you need support, and most importantly know that there are others in the disabled and chronically ill community who believe you.