My Cartoon Doctors And Going It Alone

28 Feb

I spent a lot of time in hospital in the early days and developed my own survival technique, which seemed to involve lots of mini chocolate doughnuts and writing everything down in my diary. I developed a relationship with my rheumatology nurse quite quickly but was terrified of my specialist, who I affectionately nicknamed ‘Yoda’. And over the years I’ve also been looked after by a hobbit – short with grey hair and beard – and Captain Pugwash – always wears a blazer that looks like he should be in the Navy. Their nicknames made me less scared of what they were going to tell me. I mean, I couldn’t really be concerned about an appointment with a hobbit, could I?

But despite my habit of naming my specialists after TV and film characters, I still get butterflies in my tummy before every appointment. It’s a mixture of fear and nerves about what’s going to happen behind that door. I always held my doctors sky high in my expectations – they had the ability to make me better, to find a cure for this and end it all – but sometimes, my rose tinted glasses get knocked right off. They also hold the cards that can send me spiralling away with fear again, when they tell me that my disease activity has risen or I need to have more blood tests done.

All this was easy enough to deal with when I had my parents by my side. They’d come along to every appointment, sit next to me and be my second and third pair of ears. They’d hear everything I would ordinarily choose to ignore which was usually the bad stuff and process it into something more manageable. But then I moved away to Uni which not only meant a new city but a new specialist.

The first time I went to see my rheumatologist on my own was in my first term. Mum and Dad were 200 miles away so I was going in solo for the first time. I can still remember the lump in my throat as I sat there by myself. Everything was different to what I was used to – no familiar receptionist, no familiar sweet shop filled with bribery chocolate bars, no sign of my usual friendly nurse – but I told myself that, in a way, it was a good thing. This new place didn’t know me as a sick kid, they just saw me as another one of their adult patients. I could be a new Rachel here, a new patient, a good patient.

But what is a good patient? At this point I think I was going through the stage of being one of the world’s worst patients. I resented my medications and didn’t always take them like I should, I’d push my body to within an inch of its limits, I’d turn up to my appointments but enter the room grudgingly, I’d say I was fine when really I wasn’t. What I really needed was a kick up the bum, which is what this rheumatologist wanted to do!

But this guy knew nothing about my history or me as a patient. It was like we were starting all over again. I had to go over everything that had happened in the past four years in my own words and I didn’t like it. I didn’t like the fact he didn’t know anything about me and suddenly all that stuff I had in my head about becoming the new me seemed a load of rubbish. I wasn’t a new me just because I was dealing with this by myself. Suddenly I really missed my Yoda specialist and I wasn’t ready to switch her for the hobbit just yet!

My freak out had nothing to do with him. It had nothing to do with his medical qualifications, how he talked or his striking resemblance to a character from Lord Of The Rings. It was purely down to the fact that I was growing up and my illness was coming with me. Whilst I was still at home with my parents I wasn’t going anywhere – I was just dealing with everything as it came at me. But here? Here I was starting a new life at University, with new friends and new independence but hey presto, Lupus decided to come along for the ride too. And it really hit me. This was about me. This was about me dealing with my illness as a grown up and managing my own health care. My Mum and her nurses training weren’t there to do it for me anymore. My Dad couldn’t hold my hand during my blood tests anymore. I was in charge.

In official medical circles they call this ‘the transition’. It’s the phrase doctors use to describe the change from being a child patient to being an adult. It usually happens a lot earlier in the hospital world than in other areas of your life. My actual transition happened when I was 16, when I started attending adult clinics on a Thursday rather than the kid clinic on Tuesdays. It didn’t really feel much different because I still saw the same doctor. The only change was my company in the waiting room – a lady doing her knitting rather than a child playing with building blocks. I didn’t notice a difference in the way the doctors spoke to me, there wasn’t a change in my medication or my treatment so that’s probably why it hit me like a double-decker bus when I did move.

So, I didn’t get on very well with my first rheumatologist at Uni. He didn’t do anything particularly wrong but I just didn’t warm to him, so I would see my old doctor during the holidays. I’d still go by myself so I could get used to doing things ‘the grown-up way’ but I felt so much more relaxed when I knew what to expect. And then after about a year I realised that I really did need a doctor close by whilst I was at Uni and it just wasn’t practical for her to be the other end of the country. I was referred to my Uni hospital and a different rheumatologist – turns out the previous one had left (I don’t think I was bad enough to warrant his move, though!) and it was back in the starting blocks again. This time with a specialist who didn’t look like a cartoon character.

I got on much better this time. Yes, he did things differently. He asked different questions, suggested things I’d never heard before and still made me have regular blood tests but I didn’t freak out. And I got in the habit of making lists before each appointment so I’d remember what to bring up with him. I’d write down notes of everything he said and call my Mum the minute I got out to go through them all with her. I’d finally found something that worked for me and it turns out my Lupus was heading into remission a bit.

And what I’ve learnt is that doctors, nurses and hospitals aren’t there to make life difficult for you. In fact, they want to make things better. It’s ok to panic and freak out over something new. It’s ok to tell people you don’t like something and ask them to change it. It’s ok to take someone to every appointment with you; in fact I highly recommend it. Not only is a second pair of ears a great help with all that new information but sometimes you just need that extra bit of moral support. And it’s ok to want things done your way. It’s your body and your illness so you have every right to have a say in your treatment.

I always laugh at myself when I look back on my appointments with specialist-who-doesn’t-look-like-a-cartoon-character. I quite liked him really and everything was set up so that I wouldn’t – he was new, I didn’t like dealing with this by myself and I’d already freaked out on one of his colleagues. But he’s the doctor who first started me on my adult life with Lupus and he told me that I was getting better and I’ll always love him a little bit for that!

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