“I’m glad to say your test results are normal – I hope that reassures you.” This is a phrase that I’ve heard quite often recently, and I guess that most people would expect me to be happy to hear these words. After all, who wants their test results to come back showing an abnormality? Well, actually, I do. And I want to explain why.
Unless you’ve been ill with something that you’re struggling to get a diagnosis for, it probably seems like quite a strange concept to hope and pray for an abnormal test result. Most of the time people are wishing for the exact opposite – that their tests come back clear and show that nothing worrying is going on. But for a lot of people, particularly those with chronic illnesses, we are desperate to just get something back that points towards an answer.
For the last eighteen months, I’ve been having more problems with my health. I already have Ehlers-Danlos Syndrome and various associated conditions, so I’m no stranger to struggling to get a diagnosis (it took me twenty five years to finally get that diagnosis). I’d hoped that I was past that period of my life when I finally got my EDS diagnosis and started finding out what else was wrong with me. But unfortunately, that doesn’t seem to be the case, and for the last year and a half I’ve developed a whole array of new and interesting symptoms. Recurrent fevers, significant unintentional weight loss, severe night sweats, debilitating fatigue, strange rashes and skin lesions that will stay on my body for weeks at a time, joints that swell, turn red and feel burning hot, bleeding under my skin and changes to my nails to name but a few. This also seemed to coincide with my asthma getting worse. As you can probably tell, it hasn’t been much fun!
My GP has done various blood tests and my Rheumatologist has also sent me for tests like an ultrasound of my hands and a Nuclear Medicine Full Body Bone Scan. They suspected I might have something like Rheumatoid Arthritis, Lupus or even cancer. But most of my results have come back completely normal (and the ones that haven’t don’t seem to point to any particular diagnosis). Now, don’t get me wrong, it’s great that I don’t have these things. I keep being told that I don’t have this wrong with me and I don’t have that wrong with me. But what no-one is doing is telling me what is wrong with me!
I’ve lost count of how many times I’ve prayed and wished that a test would come back just showing something – anything! And how many times I’ve cried when I’ve had that letter telling me ‘I’m glad to say your test results were all normal. I hope that reassures you.’ Because to be blunt – no, it doesn’t reassure me anymore! For the last eighteen months, my body seems to have been slowly falling apart. I’ve spent more time in bed and on the sofa than I have up and about. I’ve lost so much of my independence – I can’t drive at the moment, I need help to have a shower, I can barely lift my nieces and nephews to give them a cuddle. I’m rarely able to leave the house, and when I manage to push myself to do something (because I need to try and look after my mental health as well) it takes me weeks to recover from it. Most of my time is spent sleeping, resting or feeling too unwell to do either of those things so just attempting to get comfortable. Something isn’t right – no healthy person gets these symptoms and spends their days like this. So to keep being told that there’s nothing wrong doesn’t make me feel reassured at all. It just makes me more frustrated.
It's not that I want something to be wrong with me when I hope for an abnormal test result. It’s that I already know something isn’t right with my body because of all of the things I’ve shared above – I just want to know what it is. I want a test to tell me that I’m not going completely mad and that there is something going on inside my body that’s giving me all these symptoms. I want a test to point us towards a diagnosis so that I actually have a name for what’s making me ill. Because, without a diagnosis, I’m currently not able to access any support, any treatment, any management for my symptoms or even any acknowledgement that I’m not well. And without a diagnosis, I have no hope of things getting better.
I felt a bit nervous about writing this post, because even after explaining why I want an abnormal test result, I still worry that people won’t understand and will think I’m just strange. But I wanted to share it because I know I’m not the only one to be going through this. So many people are in (or have been in) a similar boat, and it can be a really lonely boat to be in. Most medical professionals don’t seem to understand that getting normal tests back isn’t making us feel any better, so there’s no support from them to help us deal with not having a diagnosis. And healthy people don’t tend to understand either, so we can’t really talk to friends and family. So I wanted to share my experiences in the hope it will help others to feel less alone in what they’re going through, and to reassure you that it’s perfectly normal to want those answers. I can’t imagine anyone going through this would not want to know why. So please don’t beat yourself up for getting sad and frustrated about normal test results, even if no-one around you understands you. You’re not alone in this journey, and all I can say is keep fighting. I know from experience how important it is to listen to your gut, and if your body is trying to show you that something isn’t right, then chances are something isn’t right. I just hope that, one day soon, we will all get to those answers so we can get on with treating or managing our conditions and start living our lives again.
Is this something you can relate to? Are you currently trying to get a diagnosis and just keep getting normal test results back?
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