A lot of people’s worlds come crashing down when they’re diagnosed with a horrific disease. They were doing ok before, and then they get news that the future is now going to be filled with suffering and uncertainty. It’s awful. But people forget that there are also times when a diagnosis of a horrible disease is nothing short of one of the happiest days of your life. It’s right up there with wedding days and even that time I had a poo tsunami in my local A&E department at 1am one January morning after a week of horrific constipation. Let me explain… At the age of 26 I got sick. I bumbled along with my ‘mystery illness’ and still managed. Then at 27 I got severely sick and was completely bedridden, months went by and doctors didn’t have a clue what was wrong with me. I was constantly having to fend off suggestions of psychiatric causes and had overwhelming fear that I would get worse and no longer be able to use the bathroom unaided or physically move the food on my plate into my mouth. I then found Lyme disease and fought to be tested with the NHS which didn’t get me anywhere. Next I went to a private clinic about 2 hours away, which I was too unwell to attend and found the whole experience incredibly difficult, but it meant getting tested in America.
By the time an envelope arrived in the post with my results, it had been 9 months since I was bedridden and suffering unbearably, it had been 3 months since I first learned about Lyme disease and wondered if it could be the cause of my illness. When I opened this envelope I was expecting another negative, after all, I’d tested negative and ‘normal’ for absolutely everything I’d been tested for, and I’d had practically every test a GP can order. Everything was always ‘normal’ which was completely baffling to me. I just couldn’t understand how I could feel like I was literally on my death bed and yet my tests were all ‘normal’ like the person they were pertaining to was a marathon runner. The only marathon I was participating in was seeing how full I could get my bladder before making the 10 step trip to the bathroom. So I opened the envelope, and page by page I read more and more of the word ‘positive’ and saw more and more little ‘+’ signs. At first I was in shock and couldn’t speak. I just read and re-read the same pages over and over trying to comprehend. I think it was probably the only time I have been too shocked to speak, which my close friends will attest to. Then I got my partner to phone the clinic to make sure we were reading it correctly, or that they really were MY results. They confirmed it was all correct. I was positive. I had Lyme disease. That’s when the crying started. It was like Niagara falls, I’m surprised I didn’t get dehydrated as I cried solidly for about 3 days.
What people find hard to understand is that they were tears of joy and relief. Total, all consuming joy and relief. I finally had a diagnosis, I had a reason for my illness, I had proof I was really as sick as I said I was. All those times I cried in bed from the pain, the vertigo or the fear, all suddenly came into focus and became clear, as there was now a solid reason for them. With a positive test or a diagnosis comes HOPE. It’s the medical establishment saying, ‘Yes we know what’s wrong with you, now let’s try to get you better’. Even if the odds are tiny, even if it’s going to be a long, incredibly difficult journey. You now have a DIRECTION to start going in. You’re out of the undiagnosed no-man’s land of misery, and into the shining light of being able to get actual help, being able to name your illness, and learn about it. You can join patient communities for support and see funny memes relating to your condition. (Who doesn’t like these?!) Since then, I’d have quite a few more positive tests and clinical diagnoses for a variety of infectious diseases and conditions, and although I don’t cry from the joy any more, I do still ‘like’ getting a positive because it adds another piece to the jigsaw mystery. It gives my doctor that little bit more information so she can help me improve. So, the next time someone thinks you’re weird / crazy / mentally ill, for WANTING a positive test or a diagnosis of something awful, tell them where to shove it, and then give them the link to this post. 😉