9th July 2016

It’s been a month since I last posted, longer than I intended, and I’m tempted to leave it longer still, but I think if I don’t write something I may walk away from this journey for good. So this is going to be a rough work, even for me, but I’m clinging on to the conviction that this search for hope is worth it by the skin of my teeth here, so it will just have to be what it will be. Here I am, unedited and uncensored, fighting for something I have yet to even define, but that I suspect may just turn out to be my life.

I had my consultants appointment. The one I’ve wanted for so long. The one I never wanted to risk having. It is the hope that there may be help for me somehow, sometime sitting before me in a doctors chair, and that is terrifying. It’s terrifying because hoping risks disappointment, and that disappointment may be crushing.

I decided to fight cynicism and self-protection and to resist the urge to censor what I said and what I described for fear of being labelled a hypochodriac or attention seeker. I asked my husband to help me to be honest and vulnerable, knowing that I may get burned but choosing to trust the promise that He will never leave or forsake me. I chose to believe that God knows the truth, and even if the worst happens and the doctor believes I am either mad or bad and probably lying, that it will not make it true, and I will survive their disdain.

It was hard. It was scary. And I cried a lot that day (and the following few!)

She was kind … well, she was polite. And I don’t think the shutters completely went down when tried to lay out my complex and perplexing medical history. She even seemed to accept it when I explained why neither deconditioning and fear, nor false illness belief fit the pattern of my history and ill health, and seemed to respect my decision to decline an inappropriate referral without implying that this was proof that I didn’t really want to get better. There have been times in the past when the tone of the letter I receive summarising the appointment is markedly different from the one during it, so it remains to be seen if her politeness was in fact genuinely respectful, or a device for avoiding confrontation with a patient in a consultation (sorry – cynicism seems to have slipped in somewhat doesn’t it?!)

She didn’t give me the impression that she believed my illness was not real, which was a relief having had some fairly appalling reactions and comments from doctors in the past. However, she did make it fairly clear that she does not regard it as her job to help me. She’s basically already started pushing me out of the door. Some tests have been ordered – although many that could have been have not – but she indicated that she doesn’t think any of them will come back positive, and she sympathised with me that it’s very hard when you don’t have a definitive answer, but that that is just the way it is for some people. And with a shrug of the shoulders I am being shown the door. We do have to go through the pantomime of meeting to discuss the test results and what might be next, but she was preparing the ground already to discharge me.

I have been here before. As I said to my sweet husband afterwards, I could have written the script. I was grateful for her kind demeanour, but the hard truth is that it does me no good. And with distance from the appointment, I am left just angry and hurting from the disinterest that is at the heart of her actions and decision-making. That she feels it is an acceptable outcome for me to be left with no diagnosis, no treatment and no support in living with what is a debilitating and progressive disorder. I find it hard to understand the depth of compassion fatigue that means you can look someone in the eye and say, ‘this is just the way it is’, and dismiss them. She knows that there is no one else to help me – I fit into no other specialty – and she feels no need to stray from the script and do any more than put a tick or cross in the box next to a finite list of discrete diagnoses.

I know that the problem is not simply down to her. Our healthcare system is set up around known and established specialisms and there is no longer a place for those of us who do not fit into these certain boxes, or for exploration into the unknown. She is also in a system that is chronically under-resourced and impossibly pressured, and she has very limited time and resources. I can understand the logic that says that the hard decision needs to be made to spend what precious little she has on those she knows she can help, and not ‘wasted’ on someone who she may be able to do little, if anything for. I can appreciate that, and I don’t begrudge those other patients the help they need, but the questions remain and they ring clear and desperate through my mind. Who will help me? Do I not matter? Is it a waste of time and resources to try and help me – is it right to be as pragmatic as that? Am I selfish to want some time and resources spent on me, even on the extremely slim chance that some good can come out of it for me?

I am hurt and afraid and hopeless. I am hurt by a fellow humans apparent ease with the prospect of my unending and unalleviated suffering. I am hurt by God telling me I can trust him, taking my hand and leading me on a path of hope and vulnerability, and then bringing me here. I am afraid of a future that likely will entail increasing suffering, pain and disability, and in which no one will help us. However sick I get, and however unmanageable life becomes for me, my husband and my children, there will be no help for us. How will we cope? Practically, emotionally, spiritually – how will we survive with no help. And what if, God forbid, anything should happen to my wonderful, loving, supportive husband, who holds us together and cares for me and believes in me and does the things for us that I can’t. How would the girls and I survive? The short answer is we couldn’t. And that is terrifying. So terrifying that even typing it makes me feel like an abyss is opening up inside of me.

Which is why I have been emotionally running for the hills this last month. I have retreated into my safe place where I ignore it all and bury my head in the sand. And that’s OK, I needed to lick my wounds and let the rawness of it recede before I could face it, and feel it and begin to think about moving forward, about striving for hope and embracing vulnerability again.

The moving forward in the rawness is still very embryonic, some of what is surfacing as I try and sit in this, is a sense that there will be discoveries or gifts for me in the depths of this that cannot be found in a life devoid of suffering, or in a suffering that is defined or boundaried or that ends. You have to dive to the very depths of the ocean to find the most beautiful pearls, and we miss out on them when we shrink back from acknowledging the true depth of the darkness that shrouds them, and the possibilities of what beauty it may hold. Maybe we have to enter into the depths of hopelessness and pain, without looking over our shoulders at what could have been, in order to really grasp the hope that lives beyond the world we can see. Maybe when we do that we can, in some mysterious way, pull back the veil and glimpse the beyond. Maybe the lesser hope, the relative comfort that often makes life bearable, actually distracts us from the greater, truer hope and deep peace and contentment that could be found.

Honestly, I don’t know and I don’t know if I’ve got the courage – or perhaps I’m not yet hopeless enough – to venture on into that darkness. The risk is that there is nothing there and that it will simply overwhelm me. Depression is rife and suicide is a common cause of death for those in my situation. But there is something deep inside me that whispers that there must be more than mere survival, than simply trudging through the days and waiting for death. That when the reality of chronic illness really sets in, it doesn’t have to be either denial and repression, or bitterness, that there is another way.

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