The Uphill Struggle For A Diagnosis Part 2

Read Part 1 here

I adore Rodney Mullen.  For those of you who don’t recognise the name, he is the Godfather of modern street skating. Pretty much all of those impossible looking tricks you see people doing (the ones that look like pure wizardry) were invented by him.  Now, I’m not a skateboarder myself, but at that particular time I was going through a Roller Derby ‘fresh meat’ training program (the Derby thing will get it’s own post in good time…) and I was finding that Mullen’s TED talk ‘On Getting Up Again’ was really helping me deal with getting used to hitting the floor so often.  At least, that’s what I told myself – in truth, I just really like hearing him talk.

It was precisely my love of listening to him that led me to watch that presentation, for the umpteenth time, after my GP had told me that all of my issues were psychological.  Only this time it made sense in a way that I really wasn’t expecting.  Getting up in Roller Derby is easy because getting knocked down is the nature of the sport: there’s an obvious reason why we wear so much protective gear and spend so much time learning to fall correctly.  What’s difficult, as Mullen so clearly pointed out in his talk, is repeating an action when every fibre in your being is telling you to stop.  I had been telling myself to give up on discovering what was truly wrong with me as it was safer than risking another psychological ‘kick down the stairs’.  I hadn’t even realised that I’d fallen, and here I was being helped back up.

other medical professionals had stated, unequivocally, that my problems were physical in nature; why was I allowing this one doctor to trample all over their credentials?

My mind immediately became like the ultimate game of Tetris – everything slotting into place with my own internal myths and doubts exploding right before my eyes.  I was finally able to see that I had been receiving truly shoddy care.  If the doctor wanted to stick to his diagnosis then he would have to admit that the previous twenty-four months of ‘treatment’ were akin to malpractice – if all it took was a simple blood test, then that test should have been carried out in 2013 before they started signing me off work.  And, perhaps most importantly, other medical professionals had stated, unequivocally, that my problems were physical in nature; why was I allowing this one doctor to trample all over their credentials?

I had requested my notes some time before starting my symptoms diary: the following afternoon I finally took them from their tatty envelope and organised them in a ring binder; using  dividers and post-it notes to delineate and flag anything I deemed relevant.

I returned to the doctor, folder in hand, and stated that either he was wrong or I had grounds for a lawsuit.  I flicked through the Fit Notes pointing out that every one of them could be seen as a misdiagnosis if all it takes is one blood test to determine mental illness.  I also, perhaps unfairly, accused him of only believing I had Endometriosis because a surgeon had diagnosed it, as it is another illness that leaves no trace in the blood.  What happened next struck me as rather odd – he asked me what I thought was wrong!  It took every ounce of control to not go Mount Vesuvius on his ass.  I don’t know if what I said would be considered rude, but it was certainly true, “ As I said before if I have a biomechanical problem, I go and see a bio-mechanic.  If I knew what was wrong I wouldn’t be here talking to the middle man – I’d be out there getting it fixed!”  For any Trekkies out there I was kinda channelling Deanna Troi in ‘The Loss’…  When he asked me what I wanted him to do, I simply said, though rather gritted teeth, “refer me to somebody else.”  He agreed that this was probably the best course of action. Finally!!!  But I had to remember that standing up wasn’t the end goal – I had to make sure I was still ready to roll.

The doctor had informed me that he still believed he was right – was this delay his way of trying to prove it?

You may have noticed that I didn’t mention who I was being referred to.  That’s because I wasn’t actually told.  Get. Back. Up.  I called the surgery a couple of days after the consultation and (bending the truth a little) told them I had a meeting with Occupational Health and needed to be able to tell them the details of the referral.  Rheumatology, I was told.  Great, I thought, that’s precisely where my Osteopath said I should be going.  Somehow, though, something seemed a little ‘off’.  The following day  I called the hospital department in question: no referral received.  Get. Back. Up. (Bear in mind this is not the 1970s, referrals are done on a ‘choose and book’ system and sent electronically. No need to wait for the postie or a carrier pigeon.)  I called the doctor’s surgery, again, and explained that the hospital had still not received the referral.  I was assured that it would be sent by the end of the day.  I allowed a couple of days to go by and called the hospital – still nothing.  Get. Back. Up.  Another call to the surgery, another promise of completion, another lack of resolution.  This went on for a month – four whole weeks, until somebody must have noticed how many times I’d called and finally gave in.  The doctor had informed me, at our last meeting, that he still believed he was right – was this delay his way of trying to prove it? Thank goodness for skateboarding legends…

Endometriosis is known to be co-morbid with so many other conditions

When my appointment finally came around (three months after the doctor originally said he’d referred me) the rheumatologist diagnosed me with Fibromyalgia Syndrome, alongside hypermobility, within ten minutes of me walking into her office.  She even made a point of noting that I was definitely not suffering from anxiety or depression.

Despite the fact that Endometriosis is known to be co-morbid with so many other conditions (migraine, hyperthyroidism, chronic fatigue) my GP was still insistent that I was just another highly strung woman, who just needed to ‘calm down a bit’ to get well.  The average length of time it takes to receive a Fibromyalgia diagnosis is five years.  My adoration of Rodney Mullen really helped to ensure that I wasn’t banging my head against a medical brick wall for the next two years, and for that I will be eternally grateful. And, if you need a bit of inspiration, here’s that amazing TED talk.