To the Nurse Practitioner who saw my daughter in the ER Thanksgiving Eve:
It was the day before Thanksgiving. You probably didn’t want to be there any more than we did. But, I am willing to bet that the time we spent in the ER left more of an impression on us than it did you. And, I have a few things to say to you.
My daughter – my beautiful, smart, precious daughter who has lived for the last 6 years in such chronic pain that would put you and most other “normals” on the floor, who has had her childhood ripped away by a genetic condition, who has experienced loss and suffering and affliction, the likes of which you can probably only imagine, yet does not view herself as a victim and refuses to be defined by her medical condition – came to you for help. For the first time in 6 years, she asked to go to the ER because she was in such pain.
It was complicated – with her it always is. She is medically complex. A bemusing mash up of chronic and acute issues is what we threw at you that day. That is not what you normally see and it was not clear cut. I get it. I even sympathize, a little. But, this is our daily reality and frankly, I don’t think it is too much to ask for you to do right by a kid who is desperate for help.
I tried to peel back the layers for you – she has Ehlers Danlos Syndrome, she has autonomic dysfunction, and she has something else – probably Complex Regional Pain Syndrome, the most painful condition know to medicine.
It was her shoulder that brought us in to the ER that day. It had dislocated August 1st. That injury started the CRPS, which quickly spread to her whole body and the shoulder has been a worsening problem ever since. We had seen the Rheumatologist a week earlier and he was very concerned about that shoulder, because she couldn’t move it after it simply gave out a couple days earlier. The earliest an MRI could be scheduled was December 2nd. She reinjured it in her sleep and the pain was just too much.
And she asked to go to the ER. Because she needed help. We thought the least you could do was go ahead with an MRI, so we could figure out the source of the pain or if there was any damage. And, I was hoping for something to help get her pain under control so she could participate in our family Thanksgiving.
We weren’t drug seeking. I flat out told you we didn’t want another prescription. She already has pain meds that aren’t working. I don’t want to throw narcotics at her. But, when your child is shaking and pale and nauseous because of her pain and has been for days, and when she has had a bad reaction to the pain medication the Rheumatologist prescribed and for the first time you hear her say ‘death would be easier” and you honestly don’t know if it is the side effects or the pain, you ask for help.
What we got instead was attitude. You were dismissive from the moment you walked into the room. We were probably defensive – living with a rare chronic illness that is poorly understood by the medical community will do that to you. This may come as a surprise to you, but the ER is the last place we wanted to be on Thanksgiving Eve.
You asked, rather snidely, what we expected you to do. Let me tell you now: I expected you to listen. To show some compassion. To offer ideas. To order an MRI. To show some humanity.
Did my daughter communicate effectively? No, she didn’t. Because she was in profound pain. Agony. She is trying her very best to manage a handful of medical challenges that make adults weep. Of course she didn’t communicate well.
She is still learning to advocate for herself appropriately and effectively. All of the past negative experiences with doctors have built a wall that has to be dismantled if you want to really reach her. Furthermore, her medical conditions cause brain fog and anxiety: she has trouble finding the right word, particularly when stressed and in pain. Complicating all of this is that the new med that was supposed to help, instead turned her brain to an angry mush of aggression and depression and she was not in a good place.
And she is a child, a scared little girl, a prisoner of her own body, tortured by her own central nervous system and her genes, who decided to take a risk and ask for help.
You, on the other hand, are the adult. And the professional. The onus of communication is on you. You could have shown some sympathy. You could have listened to her. You could have walked in the room not assuming we were drug seeking. You could have acknowledged her case was complex and confusing and made an effort to understand the challenges that we live with on a daily basis. Instead, you copped an attitude and acted surprised when things went downhill.
You begrudgingly offered an X-ray instead of the MRI that we all knew was necessary. Perhaps if you had been a little more compassionate and actually allowed her to express herself, if you had asked questions and cared about the answers, you would have been included in the conversation that followed. Instead, my daughter, and you would have understood why if you had listened to her, acted like the frightened and angry child she was and refused your x-ray. She may only be 16 but she knows perfectly well that not one of the multitude of x-rays she has had has EVER shown any conclusive results. She knows how much it hurts to have X-rays when you are in pain. She also knew you thought she was drug seeking. And she wanted to leave and never lay eyes on you again. She has zero tolerance for crap on a good day and this was so not a good day.
In the meantime, I was desperately texting an SOS to my husband who was finishing up his work day, three floors up in the hospital. When you walked back in the room, prepared to lay into my child for refusing the x-ray, you were obviously taken aback by a hospital employee that you know, standing in the room and standing up for his daughter. I can only imagine how things would have gone if he hadn’t shown up. I am pretty sure it would have involved my daughter telling you what you could do with both your condescension and your x-ray as she stormed out, with me juggling purse and coats and trying to salvage the situation.
Instead, you perhaps understood for the first time, that we weren’t random people who were crazy and stupid, and you changed your tune a bit. I cannot tell you how sad I am for your other patients who are also not random, crazy, stupid people but don’t know someone who works at the hospital and cannot salvage their visit at all. I mean, you were still pretty snide, but you finally offered a shot of morphine or a pain patch. Emily chose the pain patch just so she could go home and get away from you, vowing to never return, no matter how dire the situation. (That should scare you as much as it scares me.)
Forgive me if I am not overly grateful for the bone you threw us: if you had actually known about EDS like you pretended to, you would have been aware that she has fragile skin and the adhesive on the pain patch could be a serious issue, which it has. And, I’d probably be more grateful if they had helped, which they haven’t.
This particular day was just another stop on a very long and winding road. We have had some really, really good doctors over the past 6 years. We have had some really bad doctors throughout this journey. The bad ones leave such deep scars that the good ones can barely get near us for our reflexive flinching at a white coat, like a battered and abused child who never knows if the outstretched hand will be gentle or inflict pain.
Unfortunately, you inflicted a wound that will leave a scar. One that will make it harder for her to ever ask for help again. The next time she needs help, she will be more likely to just give up and suffer. And that is potentially deadly. That scar makes my already difficult job parenting a medically complex child that much more difficult. I am angry. I am frustrated. Mostly, I am sad and tired from fighting this fight alone. But, I have sworn a solemn oath to this child that I will never stop fighting for her. I cannot and will not give up.
At the end of the day, we have only our own reaction to this experience – it is the only thing we can control. So, we have decided to turn this into a positive: We will use this experience to empower Emily by helping her learn to communicate better in the future. And, instead of feeling victimized by this experience, we will have a discussion with the head of the ER. Not to get you in trouble or exact a pound of flesh, but to wrangle some good from a bad situation by educating. We have a unique opportunity to educate and advocate for awareness of EDS and CRPS – if we step outside of our comfort zone and reach out to the ER staff in good faith, it will benefit Emily and possibly countless other chronic illness patients.
We are determined to learn and grow and find some measure of good in this bleak situation and I can only hope you might be willing to do the same. Please, next time you encounter someone like my daughter – hurting, scared, scarred and a little angry – do better. Your actions matter and my daughter, and all of the other chronically ill patients who pass through your hands, deserve better.