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Open Letter to My ER Doctor, From a Chronic Pain Patient

Updated: Dec 8, 2019

Hanging up the phone to my General Practitioner, I was filled with dread. I'd called to let him know my pain had increased and I was finding it difficult to tolerate. I'd run out of ideas as to how to manage it myself. Having answered 'yes' to questions relating to neurological symptoms - pins and needles, migraine aura, etc - he had instructed me to go to the Emergency Room. I needed to be checked for infection and have a neurological exam. I also needed pain medicine only a hospital could give quickly.

I live with chronic illness and pain. I have Ehlers-Danlos Syndrome and all it's friends. The complications are many, varied, and endless. I am lucky, though, to be able to avoid the hospital for the most part. I have never gone to the ER with pain as my #1 concern. All the horror stories and a few of my own bad experiences have left me with an aversion.

ER doctors tend to be rushed. They have too many patients and not enough time. In most countries, they are also not adequately trained to deal with chronic illness/pain patients who have found themselves needing urgent hospital level care. It's a huge gap in the health care system that only gets filled when ER doctors are self-motivated enough to learn how to deal with people like me themselves.

That's what you did.

The afternoon I arrived - the ER was extremely busy. A harassed nurse told me the wait time was over 5 hours and said 'do you still want to stay?'. An awful question to ask someone who has been told by their General Practitioner to come in. I stayed. I was left there for 5 hours. Maybe more. I didn't ask for anything. I was snapped at by the grumpy nurse another time. She thought my GP should have written a referral. It's unfortunate that she was so grumpy that night, because the care I have received from nurses in the New Zealand public health system has been exemplary 95% of the time.

Finally... you arrived. You said my name softly. Rousing me from my restless slumber with ear plugs and a sleeve over my eyes. (Yes, I carry ear plugs at all times. Chronic illness 101). The first thing you said was 'can I give you something for the pain?' You took a minute to make sure you were prescribing something that would be effective, and that I was not allergic to. You stepped out and gave this script to the nurses' station before continuing our conversation.

This tiny thing caused a wave of relief. You had clearly looked at my chart, and seen that I had rated my pain at an 8. For someone who lives with chronic pain and is likely to rate their pain lower than average, you understood this is very high. You understood that I would not be able to engage in conversation about why I was there and what you could do if I was worrying about whether or not I was going to get adequate pain relief. You took this part of the problem away instantly. The nurse came back with the medication before we had really started talking. I felt like I could breathe again.

You continued to briefly, in that same soft voice, explain what you knew about me. The soft voice is significant. I have had ER doctors effectively shout at me whilst I have been in agony, or in the middle of an SVT (fast heart rate) attack. You were sensitive to my pain while talking. You spoke slowly and softly so that I could take in what you were saying. And what you were saying was impressive. You had used my National Hospital Index (a kind of national ID for medical purposes) to search my medical history. You had found documents relating to diagnoses which caused my pain - from a hospital that was completely un-affiliated to yours. You had read them and figured out what I was allergic to, what type of EDS I had, and where in my body I was most effected.

It was such a relief to not have to repeat this information. It filled me with confidence that you had found it and read it yourself. You had clearly taken the time for me, even with multiple life-threatening cases in your care that very minute. You didn't make me feel less important than them. You didn't make me feel like I shouldn't be there.

You explained very clearly what you had done in terms of testing. You did a detailed neuro exam and you explained why you thought I was safe to go home. I had every confidence that you were correct. You explained that you would hassle the pain services to have me seen more quickly. You wrote me a prescription for oral morphine. No Dr has ever trusted me with an opioid of that strength. I am 24. Everyone assumes I will abuse it.

You went on to apologize that you were not able to do more for me. This was absurd. I felt so grateful that I had simply been listed to. Treated like a human-being with problems equally as worth your time as everyone else in the building that night. You might not know how rare that is. Or maybe you do. I felt so grateful that you had given me something to control my pain. That you had not expected me to explain to you the complex nature of my condition, but you had found the information yourself. Everything you did. Everything you said. It was how every Doctor in an ER should treat every patient. No matter why they are there.

The problem - I learned the next day while visiting my EDS specialist - was 'stuck joints' in my c-spine. A few of them. Hyper mobility causes joints to move more than they should. In a lot of cases, especially in someone like me with cervical-cranial instability (extra-hyper mobile upper spine), these joints move out of their proper place constantly, and end up getting 'stuck'. Like a drawer off it's railings. If you're unlucky this then causes nerves in the neck or upper back to be pinched, causing excruciating pain. The only real way to fix it is to re-adjust those joints back to where they are supposed to be and then strengthen, or fuse, the spine and it's surrounding ligaments and muscles in an effort to reduce recurrences.

You could't have fixed me that night. The medical intervention people like me need is complicated and delivered slowly. What we need from you is compassion, understanding, relief from our pain, and a willingness to run test to ensure our safety. You have not idea how rare that is.

Thank you.

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