Okay so I apologise in advance: this post will probably be a little ranty, as it points to and highlights the many failings that led to my being undiagnosed and suffering from a chronic condition for several years.
I was in the second year of university. I lived in a share house with two friends and two friends-of-friends about 30 minutes from the university campus. I had managed to snag the penthouse – the attic room – and so had to walk up three flights of stairs to get back to my room and my solitude.
So, I used to walk 30 minutes from campus back to the house, then up three flights of stairs, and always as I mounted that final flight up to my door, my knees would feel sore and tired and almost like they were hot and burning on the inside. I would admonish myself for being out of shape and sit down in my massive leather armchair with my legs crossed. As an aside: I can no longer sit with my legs crossed without great discomfort!
It wasn’t until well into the third year of university, living in a different share house (this time with four friends – two of which also lived in the first share house), when I lived closer to campus and had less stairs to climb, that I began to notice something really wrong.
I used to power-walk everywhere – being a student and literally having no money, I was often too cheap to take the bus into the city centre, so I used to walk it. I think it was only about 45 minutes from my house. I also used to power walk to the campus every morning, which took about 20 minutes.
After a while, my knees were so sore and swollen, I realised that I had to visit my GP. So, I went to my doctors, which was right opposite the university campus.
The doctor said I had fluid on my knee, and prescribed me some physiotherapy sessions in which I turned up at the surgery, had to lie down on a bed and uncover my swollen knee, at which point the physiotherapist would put what looked like a lamp over the top of my kneecap, then leave me for about 20 minutes. I still have no idea exactly what the treatment was – maybe some form of heat therapy? Anyway, the idea was that it should reduce the swelling and remove the fluid.
I had assumed it worked, because whilst it was still hard to get around and I was still in pain, the ONE knee that was treated did seem better… But that didn’t last long.
Eventually, when I went back to my GP about this complaint, it wasn’t at my university GP, but rather when back at home at my local GP whom I’d been registered with since I was about 13.
I explained my symptoms to them – and this is where I think I let myself down. I admit that I described my symptoms incorrectly, which led them to the McGuffin that was a diagnosis of PFS or Patella Femoral Syndrome.
This was quite an understandable mistake in some respects; when I was 18 months old and first learned how to walk, I used to walk with my toes turned in and my mother was told by the doctor that this was due to one of my quad muscles being stronger than the other, and in time, it should right itself. It did, but I still have a slight ‘in-flick’ on my left foot when I take a step – the foot mid-step will veer towards my right, and for a while when I was about 10, it caused the heel of my left shoe to knock against my ankle bone so often I ended up with a wound on it for ages.
So, the doctor gave me some exercises to do, and I didn’t do them – I honestly knew they would not help. Then, I developed nail psoriasis – which is the pitting of the nail bed, where it splits away from the skin. This is a sure fire sign of psoriatic arthritis, and given my history, I went to see the GP again.
Now, I had looked online, and – I even said to the GP – you can go online and diagnose yourself with a lot, but I had numerous symptoms that lined up, and given that both my father, my brother and I all have psoriasis, the doctor agreed to do a blood test.
I had read online, that the reason why psoriatic arthritis was so difficult to diagnose, was because of the lack of rheumatoid factor in the blood. So, when my blood results came back, the doctor said, there was no rheumatoid factor, so there was nothing wrong with me… And this was where they failed.
I had read and found easily searchable information, that a general practitioner did not have, and thus left me in chronic pain for another few years or so… And it took, years later, the fact that I worked in an orthopaedic hospital in Oxford to get my GP to refer me to specialists who could help me manage my condition.
And that is pretty much my story. I always worry about getting cancer as I get older, because given my past experiences, I’ll have symptoms, go to the GP, get fobbed off and by the time they realise what is actually going on, I’m freaking terminal.
Don’t get me wrong, I love the NHS. I love the work it does, the things it achieves, and some of the people working within it are beyond amazing. I feel so lucky to have such an establishment – not just because I work for it! – it provides healthcare to everyone who lives in the country, free at the point of access, and it is crushed by the government, unappreciated by the masses, and mired in policy and bureaucracy.
I know I sound bitter – honestly, I’m not. The main thing I am thankful for is that now I have been properly diagnosed, the pain I experienced day in, day out is at an end and I am receiving treatment that allows me to be relatively unaffected by my condition – all thanks to the NHS. Granted, it should not have taken them so long to correctly refer me for diagnosis, but the end result is the same, and I am satisfied overall with the medical care I receive.
Psoriatic arthritis is a tricky condition to diagnose, and what with my being so young, often arthritis is dismissed in most patients who aren’t over a certain age – and general practitioners are just that: general. They need to know a lot of information about an endless number of health problems, both acute and chronic, so it is unsurprising that they can’t be expected to know and get everything right.
I have the utmost respect for anyone who takes an interest in and willingly trains to become a general practitioner; it really does take a special kind of individual, which is why there are so many GPs out there just not really suited to the role.