Being your own advocate

Western medicine is shit. It’s incredible in some ways – many ways – but it’s so fucking shit in so many others. The disorganisation, the lack of communication, the feeling of unimportance it can leave you feeling.

Understanding what makes me spiral into a feeling of hopelessness and desperation, despair and a wondering how the FUCK things are going to get better, helps me remember these are just feelings…the stores that come with them are not necessarily FACT. Actually, generally aren’t fact at all. They’re worry, they’re old wounds coming back into play when they’re not relevant.

Dealing with western medicine means you have to be On Your Toes. You have to be your own advocate 24/7. Relaxing and putting your complete trust in them is risky business, but not putting your trust in them is also risky business…it means you can’t relax and can’t allow for yourself to heal. It’s a balance and one that I’m still trying to perfect. This time more than any other.

Last night I spent another six hours in hospital, waiting. Waiting for a motherfucking MRI scan that never came. One that I was told I urgently needed by two doctors but then the a&e doctors decided wasn’t necessarily. What was different about last night is how I spiralled, was triggered, no matter how much I tried to not be. The amount of rage and let down that rises up when I work with western medicine – ie. DOCTORS – is huge. All the old feelings of let down and feeling messed around and sooo unimportant, fly up. They fly up and roar around my mind and body leaving words and rational speech seemingly miles away.

To even try and begin to write about my history with doctors and hospitals is a ridiculous idea. I wouldn’t even know where to start. It’s been a lifetime, literally. But what’s interesting is the one feeling that I’ve taken, and do take, totally to heart is the feeling of being unimportant. I take it right into my heart and let it trample on any sense of self love or pride or confidence or belief in myself. The way that doctors see you as just another patient, just another person with something wrong…the way that they don’t see the details of your daily life that is so effected by their lack of putting-you-at-the-top-of-the-list…the way that all this happens just leaves me deep in the middle of old wounds from my childhood.

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I was never important. I was always the kid to pick up the pieces. I was always the kid that took charge and rescued and looked after, in moments where I needed to be looked after. I never had an adult to stand in and take charge of the situation. Instead I was the adult whilst also being the young child. So no WONDER I desperately long for someone to do that for me now. No wonder that’s one of the wounds that is constantly feeling ripped or brushed or scraped open at the moment…the wound of always having to be my own advocate.

The other wound that feels raw and open is the feeling of let down. Of putting my trust and hopes in something, someone – a doctor – and then not being met. At all. When the wounds of being my own advocate are raw and open, the feeling of let down goes hand in hand. Any slight sign or any slight hint of someone going beyond their call of duty, my heart opens up. My inner child glows. When a doctor shows genuine concern and genuine care, so much so that they do more than I’ve gotten used to them doing, my inner child quickly trusts and allows that person to look after her. It’s an advocate. Something I’ve been longing for…of course this is going to happen.

But then, if what’s offered isn’t met, the let down is monumental. If the doctor going beyond the call of duty, offers something that then isn’t there in the end, the let down sweeps the ground from beneath me. The advocate isn’t what I thought it was.

It turns out the only advocate I have is in me. The only advocate I have is myself. The only person my little child can truly rely on to always follow through and always be there is myself. My inner parent. And then anyone else who steps up and follows through or meets me there, is an added bonus.

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It’s fucking hard, FUCKING hard, to always be standing up for yourself. To always be courageous and fighting your own cause. It’s exhausting and when you’re ill, it’s the LAST thing you wanna do. But, it’s the very thing that you need to do. That I need to do. I long to just completely trust the doctors, to completely just let things go and hand it over to them. But the truth is, from my experience, this means jack shit. What happens is what’s just happened to me – referrals don’t happen, scans aren’t done, one person says one thing and another says something else.

I’m learning to be a bad ass. I’m learning to give shit where it’s due. I’m learning to trust in my symptoms and keep on making a fuss even when I want to just hide away. I’m learning to not stop calling until you get what you want.

And I’m also learning to not let go of my innocence and my trust. I’m learning that despite how much I’ve been let down, there are still those professionals that really care and that go that extra mile. The sad thing is that sometimes, at the other end of that fucking mile the professional that said they’d be there to meet, aren’t there.

But unfortunately, that’s just how the medical profession fucking works.

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