My Apology to the Patient With ME I Treated Many Years Ago

I was a psychiatric nurse before I developed ME. I was a good nurse and treated my patients holistically and with dignity, taking their wishes into consideration and trying at every turn to follow their wishes as much as I could, legally, ethically and professionally, but I have an apology to make.

One day we received a patient who was experiencing psychosis. Being forewarned, we dug out their file (as they were previously known to us) and began our study. A few months before this impending admission to our ward, they had been diagnosed with myalgic encephalomyelitis. Out came the medical text books, questions were asked around the nursing station of anyone who knew anything about ME and consultants were grilled. I had a slight knowledge of ME as my cousin had it, but to be honest, although I thought it was terrible, I had not paid much attention to his onset and subsequent care needs. It was just something he “had.” As I was deemed the most knowledgeable, I was assigned as named nurse for this patient. Our psychiatric consultants couldn’t give us any real answers as to what ME was, the textbooks hardly mentioned it at all and my colleagues were more in the dark than I was. This was in the days when it was referred to as “yuppie flu” or “lazy-itis” and Google was not what it is today.

 

Our patient arrives and I make them feel welcome in the ward and go through our usual assessments with them. They said they were sensitive to light and sound and a host of other symptoms. I manage to get them a room of their own and we make sure the lights are usually off for them. All in all throughout their stay, until they are well enough from their psychosis, I make every effort to ensure things are done in line with what they need with regards to their ME as well as the mental health concerns they are currently going through.

After a number of weeks of treatment our patient is due for discharge. On the day they leave they hug me with the tightest hug they can manage and thank me so much for being so caring about their ME as well as their mental health. I say, “Not a problem – as long as you feel better and can cope, that is what we are here for.”

Now here is my apology. I know I did everything as well as I could for this patient. I listened, I took notes which my colleagues would read and hand over to each following shift and I made sure everything was the least energy-sapping I could make it. However, through all this compassion and caring, a few things continually went through my head – which I never spoke out loud. Things like, “Why don’t you just pull your socks up and get on with it?,” “Can’t you just do…(whatever the task might be)?,” “Honestly, that is such a simple thing – why can’t you understand it?,” “Sound? What sound? You must have ears like a bat.” And so on. I never voiced them because I saw the abject terror and fear in our patient’s face when colleagues of mine would say these things within earshot and realized that those words hurt.

Now, after over a decade of having ME myself, I have far more understanding of this disease and the symptoms we live through each and every day. I apologize to my patient for my ignorance of ME at that time and that I did not make more of an effort to go out and find out more about it. I apologize for thinking those awful things, as I now know the simple sentence of “Can’t you just…?” brings so much frustration, annoyance and often anger to the fore, especially when you hear it from people you are supposed to trust and have faith in. I apologize for not stopping my colleagues from making you feel inferior or a burden and for not educating them better about ME. Most of all, I apologize for not being able to give you the complete care we should have. We did our best, but in my view, looking back, it could have been so much better for you.

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Thinkstock photo via Wavebreakmedia Ltd.