D-Day… or diagnosis day. A day that will remain in my mind for the rest of my life, yet is still a blur. The build up to this day had been long coming – 3 years in the making in fact, but still nothing can really prepare you to be told you have anything, regardless of how big or small.
I’d been tested for all sorts by this point – including cancers and autoimmune diseases – and had been through every test under the sun when my symptoms started in my bladder. I tried to see today like any other day, just another doctor’s appointment, just another round of tests.
Diagnosing Fibromyalgia isn’t simple. Everything else must be ruled out first, hence it can often take upwards of two years before fibro is considered. In my case, it was initially thought that the main problem was in my bladder, so it took a good 6 months on different tablets for simple over-activity before I was even referred to a Urologist (again, a year long process under the hospital that got me nowhere). So by the point of D-Day, I wanted and needed to know once and for all what the issue was so that I could begin to deal with it.
The only physical test for fibro is a pressure test, so once I’d had an initial discussion with my GP about the whole range of tests I’d already been through and my current symptoms, this was the next step. There are 18 pressure points which in someone with fibro causes you to flinch or cringe when pressed, because the pain in those particular spots is generally more unbearable. In order to be classified with fibro a reaction is expected in a minimum of 11 of these points – I had 12. And it hurt! I had to refrain from slapping her pokey fingers away!
So that was that. I was told I had Fibromyalgia. I had to go for some more blood tests at the hospital straight from the doctors to rule out anything else that could be connected (I think this included arthritis, but by this point I couldn’t really focus on what she was saying!) I wasn’t given a whole lot of advice, only that I should learn my own limits, and I was given a website to access a leaflet. And then I left. I was expected to digest this information, with little advice, and after three years of being dragged through various other departments, and simply get on with my life.
How I reacted was a mixture of emotions, and I have since realised that is ok. One thing the doctor asked me before I left was how I felt about the diagnosis. Are you having a laugh mate!? What sort of question is that! But anyway… my response was “well obviously I don’t want it, but in the grand scheme of things compared to everything else I’d been tested for, it wasn’t the worst and at least now I know.” That was a gut instinct response and actually one that, now I’m through the fog of sheer panic, a feeling I still hold. Although at that moment in time I’m not sure how I saw through the shock to see it this way.
I walked out of the surgery that day feeling lost, scared and confused (well, more than normal at least!). And I knew getting in my car this was going to be a journey that would take a long time to figure out.
- Take someone with you. I didn’t, and have learned my lesson. Having support by your side, and someone else to think for you, will make hearing a diagnosis easier.
- Ask as many questions as you can think of there and then. If you suspect before going to the appointment that a fibro diagnosis is what you’re going for, take a list (you can find a sample list in another of my blog posts!)
- It’s ok to feel scared, it’s ok to be confused. No, its not the worst thing in the world you could be diagnosed with, but being told you have an ‘illness’ is still a shock in any capacity. Let yourself feel how you need to feel in that moment.