For the duration of my Crohn's 'career' so far, I've had, on the whole, some excellent doctors and nurses looking after me. I have an wonderful consultant in my local hospital, a lovely woman who deals with my drug trial that I see regularly and a few numbers I can call in an 'emergency'. This is so reassuring for me, after having to explain myself again and again to different faces for over a year.
From my experiences in talking to other Crohnie's, these pleasant experiences with the caring profession can unfortunately be quite rare. Don't get me wrong, I think the health service is wonderful and I genuinely do not know what I would've done without them, but sometimes it can be a bit of a minefield in negotiating your way through the business of healthcare politics.
A lovely lady I met through Twitter tweeted today that her GP had said "You don't look like you have Crohn's" - what?! What does that even mean?Has there been a chart invented to establish what disease you have simply by looking at someone? If so why are we wasting so much money on advanced medical equipment to carry out tests when all we have to do is get a peek at the patients visage?!
Crazy town there Doc. Pretty insulting to boot. Is he implying she is exaggerating her disease? Or that she is somehow magically cured since her last visit?
It feels like a major blow at times when the people who are supposed to understand the intricacies of Crohn's still stumble with the basics.
Wasting time really is no good with an illness like Crohn's - it can deteriorate so quickly there's no time to be batted from pillar to post until you are listened to. The fact is, with all the mountains of knowledge our doctors have remember they are not feeling what we feel and living with what we do day in, day out. That's what is important to convey. For me, the only moment I felt I was really being understood was when I'd been through every treatment they could fire at me and still felt like death would've been a more viable option. My consultant took one look at me and said "This is really getting to you eh? I can see you've had enough" - then she did everything she could to push for my surgery. Rather than getting me put on a 6month waiting list she attended lots of meetings with surgeons to fight my corner. One medical professional having to act like a defence lawyer up in front of a group of medical 'judges' trying to get me off the Crohnie hook.
There you see the main problem- why does the phrase 'fight' even have to enter the equation? We are sick - we just want to feel better. I completely understand having to wait for surgery or appointments with the VIPs of the medical world, there are only so many staff to go round. But, and here's a radical thought here so bear with me, wouldn't things get dealt with a lot quicker if our GPs didn't firstly assume we are desperate for a sick note or faking for drugs? If they at least gave us the benefit of the doubt and listened- then decided we are fit to be treated? Obviously generalising here but in my experience any appointment with my GP is undercut with the time constraint and feeling of being doubted.
My main tip is to try and be a Patient-Patient. It can be incredibly frustrating to have someone in the medical profession doubt you, or come out with judgements on your illness which make you want to garrotte them there and then. But these urges are counter-productive. Mores the pity. Curb the rage and don't allow yourself to get agitated. Explain as much as you can as to where you are in terms of your illness and if you are still dissatisfied, calmly request a second opinion.
If that doesn't have the required effect, become an Impatient Patient - go back again and again until you are taken seriously, until you make your doctor sick (of the sight of you).