An open letter to my doctors on #BADD2017

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Dear Doctor,

I know you work hard and have a bazillion patients, and I thank you for all the prescriptions, referrals and tests you have authorised. But we need to talk.

You see, it’s not you – it’s me.

I’m not like a lot of your other patients. I know they come in and you diagnose their chest infection / sprained ankle / high blood pressure and you find a way to fix it and they go away happy and better than when they arrived. I realise I can never be that simple, easily-pleased, grateful patient, because no matter how many times you see me, I never get better. And every time I see you, I complain of a new and inexplicable symptom. So I spend your budgets and take up your time and seemingly with no resolution. I frustrate you – you make that very clear.

But here’s the thing. It’s not my fault. I have an unfortunate collection of chronic diagnoses (currently 11, but ask me again after my tests next week) that disable me. Some of them are quite rare and I have to spell them out loud, so that you can type them into your notes. I didn’t ask for them, I’d rather not have them, and every day of my life is like fighting a war with my body. A battle each day, in addition to working to earn a living and keeping house and being a friend and a daughter and a tax-payer and generally trying to keep my life afloat.

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So, I have a favour to ask. I know you only get 10 minutes to see me and I know that your surgery / clinic is running late and there are piles of papers needing your signature. But I’ve written a list for you. Think of it as a prescription for doctor – patient understanding, if that helps:

1: When you say “It’s probably nothing serious” I know that you mean “This new diagnosis isn’t likely to kill you”. But what I hear is “Medical professionals consider this to be a fairly minor irritation so please don’t expect any on-going help”. I get that, for most of your patients, your words are comforting but to me, currently battling 11 conditions, I’m wondering whether my new diagnosis will impact an existing one and whether any new meds will be contraindicated with my existing meds (and let’s not pretend that you’ve never sent me home with a combination that could do serious damage. I’ve forgiven, but I’m unlikely to forget). I’m also wondering whether this new diagnosis will be the final straw that means I can no longer work, or walk, or stay sane. I get it – on its own, this condition is no big deal. But in combination with all the other issues I’m facing, it’s not always that simple.

2: When you say to me that you want to refer me to someone else, I know you are seeking specialist advice to help me. But you should also know that I’m currently under the care of four other consultants and I’m struggling to juggle them.  I’m worrying that I’ll face problems at work, because I know the new appointments will only be available between 9am and 5pm, which is kind of when I’m supposed to be in my office… Will I be able to get yet another half day off to go to the appointments?  Will there be disabled parking? Will I struggle with the stairs? Do I need to find someone to stay with me for 24 hours after a sedative? Will I be well enough to call a taxi to take me home after the appointments? I’m grateful that I can see a specialist, but the logistics of seeing several each month are tricky, to say the least.

3: Could you stop judging me on my appearance? I’ve seen my notes and reports and I know that they say things like “well-dressed and articulate”, “looks pale, looks tired”. The thing is, I am often extremely well-presented. Not because I feel well, but because it’s one of the few things over which I still have some control. You see, I’ve had to give up my hobbies, relationships, jobs, homes and dreams thanks to my illnesses. So if I can still choose one thing, it’s that I will put on a nice dress or paint my nails or wear makeup. If anything, I make more effort when I feel dreadful and need cheering up. So please don’t assume that a jolly scarf means a jolly life.

I realise that, on their own, these requests may seem unnecessary or demanding. But I want to somehow make you realise that it’s really, really hard work managing my conditions and you only see the tip of the nightmarish, medical iceberg that threatens to sink me, every day. I’d really like it if you could try to take an holistic view of my care when you are making decisions. It seems that none of my doctors talk to one another, and so I’m doing my best to cross-reference the symptoms and letters and medications and side-effects of the medications. I could do with an assistant to calculate the gaps required between one incompatible drug and the next, and which procedure should take place when, and to remind me to fast before Test A but drink a litre of water before Test B and to phone for the results of Test C.

I’ve got an IQ of over 130 and I’ve spent the past 20 years reading up on my conditions and treatments but, at the end of the day, I’m not medically qualified. The pressure of feeling that I, alone, am responsible for linking together all the different strands of medical intervention is overwhelming and I’m terrified that one day I’ll misunderstand something and a doctor who is relying on my knowledge will accidentally maim or kill me.

Can you help me stay afloat? Please?

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