Inaccessible

Last week I fell down the stairs. It was a bad fall – as I started my descent my arm went through a glass picture on the wall, shards of glass went flying and instinctively, to avoid putting my hands in the broken glass, I failed to break the fall and landed with full force on my back.

My first thought was –

I’ve broken my back. The pain was unlike anything I’ve felt before – comparable to my four unmedicated births – so intense that I didn’t realise for about twenty minutes that a piece of glass had embedded itself in my elbow.

My second thought was –

How can I kill myself before someone calls an ambulance for me.

I know this will sound shocking, and I’ve been debating whether to share this in a blog but decided it might help practitioners to understand what a lack of access to healthcare can look like in practice.

Now to give you context. Firstly, I am not suicidal. I once lived with near constant suicidal ideation, so perhaps for someone like me, that second thought is not as irrational as it might sound, but bear with me.

To give you more context. I am a survivor of Child Sexual Abuse. I am a survivor of the Mental Health System. My experiences of medical care throughout my life have been nothing short of traumatic. Horrific – at times, and it is not that I’ve been particularly unlucky or that it’s even unusual. Many survivors of CSA will say the same – and it often stems from a practitioner’s profound lack of understanding of trauma, shame, and how to best support.

We hear phrases like:

Don’t be shy, I’ve seen it all before.

Trust me

If my 5-year-old patient can be brave, I’m sure you’ll manage just fine.

I’ve heard all of these, and far worse – and gradually over the years have just stopped going to the doctor.

Interestingly there is a correlation between processing the trauma in therapy and my fear worsening, and this surprises me as I thought the opposite would happen, but on reflection it makes sense. In processing trauma, we allow ourselves to feel the impact. We try out new ways of surviving that don’t involve quashing the bad feeling. We regain our lost voices and body autonomy. In my case, it’s like my brain has said, ‘you don’t have to put up with that anymore. You deserve better’ – and I do. We do, and there is ‘better’ out there, there are many wonderfully informed and empathic healthcare professionals but in order to find them we need to access healthcare, and we can go round in circles. Avoidance feels easier.

To give more context – I am someone who needs medical care. My back is already in a bad way – I have a severe musculoskeletal disorder as well as osteopenia and arthritis in my lower spine and pelvis. Surgery never happened in adolescence as it should, and in adulthood surviving trauma took priority. When I did have interactions with consultants, they were retraumatising – devastatingly so and I made a decision not to have surgery. Partly because there was no guarantee it would be successful and the risks were so high, but mainly because I could not bear to have the hands of those surgeons that treated me and my fears with such contempt and disregard, touch my body. I would rather die.

Since then, my attempts at accessing care for any ailment are few and far between – always at the point of crisis. The last time was in 2020. For the first time, I tried to express my anxieties and I asked tentatively for small and reasonable adjustments to be made. They were met with refusal, and terrifyingly, triggered an unprompted intervention with my psychiatrist who I had not seen for a long while, and I was informed I was having a ‘mental health relapse.’ I realised how woefully misunderstood reactions to trauma can be, especially if our medical records show a litany of previous ‘diagnoses’, which of course, many of them will.

I was lucky enough to have an advocate who stepped in at this point, but had I not, worst case, my fear response – fight, flight, or freeze, might have instigated a loss of control over the situation. It was at this point I recognised that whilst I reject all labels I was given in the past, by those who could only see survival mechanisms and not the root cause, the medical profession does not. In that moment, my acute distress equalled ‘Mad’ with a capital, in their eyes, but looking at my records, without taking the time to build a relationship of trust and to get to know me as their patient, and understand my life journey, how could it not?

This week I’m grateful to the support of medical practitioners, colleagues – allies and staunch supporters of the ongoing fight to influence chance in an inflexible system – and I hear their frustration too. They want the change as much as we do. It can’t be a great feeling to be suggesting over WhatsApp things to ease a possible cracked rib. To be unable to professionally diagnose or prescribe pain relief as a GP because I am not and cannot be their patient.

I am also grateful for the survivor community, the ones who didn’t say, but you must go to A and E. You can’t leave it like this, because they just understood and accepted my predicament. Some like me, find accessing healthcare impossible, and the ones who don’t, still got it.

If only this understanding extended across the NHS. How much easier life would be.

How unnecessarily complicated and difficult we make it for those who have experienced Child Sexual Abuse.