The Psychology of Free Health Care

TW: This post contains details of symptoms of FND that some readers may find triggering or distressing.

I am interrupting my documentation of the wonderful Welsh holiday because that bipartite joy seemed like the perfect opportunity for a shit sandwich.

I want to start this by saying that I love the NHS. In this post I’m going to talk about one of very few downsides I have experienced with having a National Health Service, but this problem is not insurmountable, and it is immeasurably more palatable than the alternative of living in a country where basic health and welfare must be ‘earned’. The psychological drawbacks of that mentality, that not everybody has the basic right to care and safeguarding, are far larger than those I will discuss today. But in the hopes of improving life for ourselves, I still think these comparatively trivial issues are worth talking about.

Years before my diagnosis of FND I began suffering with what I now understand to be my first symptom of it. For me, Pudendal Neuralgia has been the harbinger of suffering burning up my pelvic floor for years now. If you’ve ever had a UTI, you know the pain I’m talking about. My Pudendal Neuralgia gives me the pain of a UTI all the time. Now, because I was a teen (and especially because I was a female teen) I was too embarrassed to go to the doctor about it, and because it was so persistent, I didn’t really have any faith that it could get better. (There is something here about a feminist theory of guilt and deserving physical problems, especially of the gyno-urinal kind, but I won’t go into that now).

Anyway, I struggled with this aching, burning demon for years and years, and like all prolonged pain a lot of my personality was subsumed into it. It rippled into depression, into being bitter and short with the people around me, exhausted, even cruel. When you are living, constantly, with something so intolerable and yet so indefatigable, it isn’t surprising that it becomes impossible to be the best, kind, healthy version of yourself.

Finally, encouraged by enough feminist literature and strong women in my life, I found myself able to list it as one of a plethora of symptoms in a doctors’ office talking about my Functional Neurological Disorder. But, since the NHS is spread so gossamer thin, I hardly ever actually get to the bottom of my double page list of symptoms before the timer goes for the end of the appointment and I have to book again. Then I wait until the end of the waiting list, find myself unable to get to the doctors’ or hospital due to mobility issues on the day, rebook, wait, and on and on it goes. For two and a half years now, I have been trying to receive care for any of my symptoms, and virtually no progress has been made.

But here’s the thing; because I know the healthcare I’m getting is free, there’s this feeling of ‘we should be grateful for whatever we can get’. I have found myself not fighting my corner, not following up, not being frank about what I need and when I need it. When I suffer through a year of falling down the stairs, collapsing on the train, wee-ing myself, spasming, brain fogging and living with unbearable pain, waiting for an appointment and by some miracle finally get to one, I have to leave feeling lucky, even though nothing has changed. Even though I’m no better and must start the process again indefinitely. Because other people don’t even get that.

It is a tricky place to be psychologically, and it’s easy to fall into the welcoming arms of resignation. The nights spent crying and screaming with frustration are too often followed by a period of ‘fuck it, it’s easiest just to stop trying’. So, this is a note to myself above anything else: don’t stop trying. Take a deep breath. Rebook that appointment. Make a list of all the symptoms and slowly work your way through them. Be kind to the doctors. Be kind to yourself. Do your physio, take your medication, do your best. Because one day things will be better for people like me. As long as me and all the other little warriors out there keep showing up and making our voices heard, it won’t always be like this.

The truth is we all deserve better than what we are getting, and not to the fault of any of the hard-working doctors, nurses, administrative employees or medical researchers. In fact, I believe they are all doing far more than is reasonable for them to do in the name of making life better for patients. People doing the kind of work that ‘isn’t enough for me’, are working themselves sometimes literally to death because they want the world to be at a better place than it is. That’s a truth that I’m learning to live with more these days: Yes, I deserve better…but it isn’t anybody’s fault. There isn’t a ‘bad guy’ in this situation, I can’t sit ‘illness’ down in a room and give it a good talking to. It’s incredibly unfortunate, and it isn’t fair for anyone. But I think when you admit that, there’s a little comfort to be found.