“Reading what happened to me has incredible value. It is very hard, but it is important to know it happened. I need to understand that it took place in order to continue. After all, it’s my life, isn’t it?
M.J.P. 55 years, 60 days in ICU.
Illness suddenly invades people’s lives, and turns everything upside down, without warning and without measuring consequences. If it is severe enough, it is accompanied by an admission to an unknown, highly technological and often hostile place: The Intensive Care Unit.
Getting sick and being admitted to an ICU does not deprive us of the ability to feel. So, in this setting, maybe the first question we should ask ourselves should be … what do people feel during their stay in our units? Often insecurity, fear, loneliness, shame, frustration, anger, guilt…
Why?… would probably be the next point to think about after answering the previous one … Because they do not understand what is going on, they cannot communicate, sometimes they feel intense pain with daily activities such as a “simple” postural change… Most of our patients also feel exposed, just “protected” by a sheet, which anyone can withdraw without any difficulty. Another common feeling is guilt for being in some way responsible for the suffering of their loved ones…
When we put all of this information together, it is easy to understand that all of our patients have a common characteristic: Vulnerability. We should not forget this point, because it seems to be the basis to approach to them while being in the ICU and then when they leave it.
On the other hand, disease itself, technology which supplies organs when they fail, sedatives, and sleep deprivation…all of them are factors that make people forget what has happened. Often, patient’s memories of the days in the ICU are fragmented, delirious, or directly absent. The lack of information is accompanied by uncertainty, and calls for insecurity and fear. Our brain is not prepared for emptiness, and the absence of memories, powers, even more if possible, vulnerability. In addition, when these symptoms gain prominence, they lead to anxiety, depression and post-traumatic stress disorders, with all of them hindering the road to recovery and worsening quality of life. When we ask patients which is the most important item after ICU, the answer may be surprising to us: “Surviving is not the point, it’s the way we survive”.
One more time, another question arises… do we have any resources to prevent all this from happening? Truly, there are many variables over which we have no control, but on the other side, we know that we can help our patients somehow. Maybe trying to solve a question that they repeat themselves once and again… what happened to me, and why am I in this way?.
ICU diaries explain events occurring in ICU using an everyday language to facilitate understanding. Our intention with them, is to contribute to the reconstruction of patient’s biography after being interrupted by a disease and an admission to the ICU, which left them with some sequels they were not ready for.
To elaborate them, you just need will and time to write … If we compare our life with a puzzle, maybe one of us have the piece that others can’t find …
From the Itaca Group, we want to enhance this activity and add people to the network of ICU diaries. If you are interested in the topic, we encourage you to be part of this adventure for which you must fill out the form (click to access).