It’s over 2 years now since the more extreme end of my chronic health problems began. And if someone had told me then, that diagnosis would still be a topic on my lips today, over 2 years later, well I’m honestly not sure if I would have laughed or cried.
The worst thing seems to be that I am not alone. Where there is a person with chronic ill health there’s often a ‘story’ regarding diagnosis, and often a long, complicated and at times ironic one, frequently absent the Disney finish we’re all searching for…
‘And so the beautiful princess discovered that she had ‘totes awks’ disease and the handsome Dr came to her rescue with a pill, and she lived happily ever after.’
Also, is it just me, or is there a bit of a weird diagnosis trap going on here? To me this is the dance of the diagnosis trap:
- Engage with GP regarding health issues
- Blood tests
- Referred to consultant
- Not sure, could be this could be that, try this!
- ‘This!’ doesn’t work.
- Ill heath continues
- Back to GP
- Blood tests
- Get frustrated and start trying to proactively find solutions
- Go online(!)
- Discover illness which matches your symptoms
- Check it on NHS website (as that is the responsible thing to do – chat rooms on illnesses are to be avoided at your peril)
- NHS website says helpfully – ‘if you have these symptoms talk to your GP about whether you have this illness’
- Go to GP explain that you found said illness and that it matches your symptoms
- GP looks at you like crazy hypochondriac and instantly judges you to be someone who spends all day trying to concoct illness for yourself in chat rooms
- GP orders blood tests…
- …and around we go again
(eventually you turn into crazy lady in chatrooms, but it’s the system that drives you there, the crazy diagnosis trap! – starts sobbing despairingly into hands, please don’t judge me)
Don’t get me wrong I have a lot of sympathy with GPs, I really do. The job must be a nightmare (I couldn’t be putting up with that shit!) and there are some real gems out there who work so hard to help you.
I sometimes actually wonder if they really look at me like I’m a crazy hypochondriac, or whether thats just me projecting my own neuroses onto them. Because after a while you start to think that maybe you are just crazy, maybe there actually is nothing wrong with you, how can there be? The doctors can’t find anything, and they are experts!
You can almost start to take comfort in this theory. ‘It’s ok, don’t panic, I just have an overactive imagination and enjoy attention, there’s nothing wrong with me – phew!’ But there’s a problem, a few days later you’ve hit be a massive flare of symptoms, are unable to get out of bed, and now you’re left thinking – ‘can I really be imagining this?’ and of course the answer is ‘no you’re not, now bloody get yourself back to the doc and sort this shit out once and for all!’.
But here in lies the next problem. Diagnosis fatigue.
Most ill health issues either directly or indirectly increase fatigue and are physically and mentally exhausting. Fighting the battle of your life to get a diagnosis is about the last thing you need when you feel like that. What you actually need is to curl up on the couch with a cup of hot chocolate (or glass of wine if you are of the slightly less wholesome variety – which lets face it I am) and a trashy gossip magazine (you know the type, that you can never admit to reading publicly, but…).
In my two year journey I had a 7 month period where I didn’t visit the doctor once. Now for about 4 of those months I was feeling remarkably better than I had been, but for not one of those months was I back to my good old self well. I struggled with my health the whole time and my life was greatly impacted by that struggle. But, the thought of starting the battle all over again just became such a mental block for me that my husband literally had to drag me kicking and screaming to get me back to the GP.
In the end he was right, it was worth it, I was quite quickly diagnosed with Fibromyalgia soon after that point. However, even then the drama continues, because the Rheumatologist herself said it doesn’t explain all of my symptoms, that there must be something else going on. And so now we enter the third phase of my journey ‘Diagnosis 3 – The Thyroid Years’. (Phase one was ‘Diagnosis – The dark art of neurology and the unexplained neurological event – probably a virus’ – I know what you’re thinking, catchy isn’t it.)
The good news is that while all of the above still applies, and it really does (groan!), I am learning as I go. Now I don’t wait for someone to cure me, now I know that there are some changes that I can take control to improve my health and life in the absence of my white knight (Dr) riding in to the rescue. I have to take that empowerment and use it (mainly because it’s all I’ve got).
And so I harp back to the reason for my blog. I need to go on this journey, for me. I need to take control of my life, my health and my recovery. I need to be in charge of my own wellness. And I know I’m not alone.
Stand back fools, diagnosis or not, this bitch is getting healthy, and there is nothing anyone can do about it! (slumps down in chair due to fatigue from mini energy burst, dam spoons!)
‘And so the beautiful princess discovered that she had ‘totes awks’ disease and the handsome Dr prince came to her rescue with a pill, and she lived happily ever after.’
‘And then she woke up, realised no one was coming to diagnose her or rescue her, so she jumped on her horse (or on her laptop) and decided she would have to go in search of a fix for herself!’
I would love to hear about your diagnosis journey below, that’s if you have yet reached that destination. I know there is a lot of frustration out there and I completely understand, I’d love to chat about it below…