The last week or so I have not slept well. I have had this foreboding anxiety that just will not settle even when I am desperately tired and in great need of rest. Yet it makes sense as today marks 2 quite significant anniversaries that happened in the last 2 years. On February 17, 2014, I entered an ER in Austin and into a medical encounter that will forever be seared in my body and mind. And on February 17, 2015, I left Austin for Maryland and entered into the journey of this last year which has been one of my greatest struggles.
On this occasion, as I did last year, I wrote again to the hospital and doctors. I don’t know if I will do this every year, but I feel with the events still fresh in my mind and the opportunity for change that is at hand, I must say something. And I was only further inspired to address this issue once again after some recent discussions with others of the impact of medical trauma.
I will not go into the details of the hospitalization here. That can be left for another time. Today I share the email as I think it might speak to something bigger than my own experiences.
Dear Hospital and Doctors –
I can hardly believe that today marks 2 years since I came to the ER which resulted in surgery for an abscess and one of the most traumatic encounters I’ve endured. I still maintain that it was quite literally one of my worst nightmares. And since then, through many hospitalizations for various reasons, I have yet to encounter a systems failure as I did in your hospital – one that occurred on every level and one that I desperately hope that you have made changes to.
Not too long ago I connected with another patient advocate to discuss the issues of medical trauma – what many of us with chronic illness face on varying levels and for varying reasons. Unfortunately it is quite under recognized – in fact on a recent trauma intake form when they went through the list of possible traumas – loss of a loved one, natural disaster, suicide, assault – medical trauma was not listed. On asking about what other trauma I may have experienced I told them to include the medical trauma. When they asked why, there was no way to concisely explain what had happened except to acknowledge that it did.
Lest you think I am arbitrarily stuck in the past, I come back to this anniversary and feel it’s important to write to you for 2 reasons. First, to quote Rose Kennedy –
It has been said, ‘time heals all wounds.’ I do not agree. The wounds remain. In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens. But it is never gone.
If I have learned anything in my years of therapy and as an advocate, those moments of pain that truly shape us will forever be engraved in our very being. If we choose to “just move on” we are ignoring the profound impact that they have had and will forever continue to have. Yet when we acknowledge their presence, we have the chance perhaps to understand, to process, to integrate the experience.
Second, and most importantly, because I, someone who does not much believe in hope, do hope that you have made changes. That though this event may not be as present in your memory as it will continue to be in mine somehow out of this you were able to find ways to better help others. Perhaps I am naive to think my one voice will have any impact on your operations. Perhaps you find this email simply annoying and feel antagonistic against someone who would send a 30-some page letter to regulatory agencies and speak about this publicly. I assure you there is no reason to be adversaries in this regard. I have no cause of action against you other than in my reprove of some who were not truthful in their dealings with the medical board. I have no want to pursue some vendetta against any of you or your organization. I quite honestly just want to know that change has happened and others will perhaps not have to experience what I unfortunately did.
In the idea of medical trauma comes the idea that patients by nature at some level have to be submissive to those that would treat them. They have to submit to the knowledge of doctors and to the needles that penetrates their skin. They are without control in many matters – often seeking healing in times of great desperation. For those of us with chronic illness, we subject ourselves to treatment that again and again violates us on both minor and intense ways. A needle prick every day for a diabetic. A pill whose side effects leave us in need of even more pills. A procedure that leaves us helpless, exposed, and scared. A conversation that makes us vulnerable and fragile in both body and mind. These are no small things, especially when they must be repeated and cannot be avoided.
That said, there is a small way to allow patients at least some dignity in all of this – and that is to work together. To be united after trauma rather divided in fear and pain.
Last summer, in consulting with a pharmaceutical company, I was asked by one of the VPs what I thought patient-centricity means. I told him that it was quite simple really. Its the same thing that every person seeks, in particular patients- every single person I’ve ever met simply wants to be seen, heard, and respected/acknowledge/understood.
I ask simply for these things – for my pain in these events to be seen, heard, and acknowledged – and that that acknowledgment will encourage you to continue to work toward better care for your patients.
I would love to hear what changes you have made in the past years.
My best to you and yours.
Erin M. Gilmer
The only thing I know is this: I am full of wounds and still standing on my feet. – Nikos Kazantzakis
Out of suffering have emerged the strongest souls. The most massive characters are seared with scars. – Kahlil Gibran
For previous posts related to this event please see:
- Not Meant to Be
- Why EMTALA Still Matters But Isn’t Enough
- Four HIPAA Violations
- 3 Insights on Social Media and Healthcare From E-Patient Dave (the details are a little off but he is telling my story about tweeting)
- Glitches all too common in hospitals (a story on how the Ebola crisis in Texas was in part a systems failure. I talked to the reporter about my experience and how this was more common than not, but rarely discussed unless it’s a high profile case.)