Mental health, depression, anxiety, fear, disassociation, isolation, adjustment disorder, PTSD the list goes on, but even me typing those words feels a little strange and that they should come out in a slightly faded, not quite visible font. Issues around mental health and our emotional responses still seem to me a taboo subject- but it is there, the emotional effects can sometimes be even bigger than the physical effects of the thrombosis, especially if you are the person left behind. You may have no physical disability, but a part of you is missing, has been taken away, brutally, without warning, without explanation and often, though not always, without any empathic acknowledgement of your feelings from the health care professionals you entrust yours or your loved ones life with.
Dr Simon Noble Medical Director of Lifeblood has had his research paper published in the British Medical Journal which can be read here on the long term psychological consequences of symptomatic pulmonary embolism. I am so grateful to him, his colleagues and the participants for doing it. It highlights an area where more research needs to be done, and shows how important it is to give and hear the patient's voice. The medical professionals we meet along our journey can hopefully offer us the information that we need regarding the procedures, medication and condition we have, however what they can not do is tell us how to feel, nor can they rob us of this. I remember after having my CT scan in a busy corridor, sitting in a make shift wheelchair with leg extension, as I had my leg in a locked knee brace, feeling scared, confused about what was happening and unable to breath. It was there in a corridor that I was told I had multiple PE's, I was in a state of shock, feeling scared and unsupported I will never forget what a doctor seeing my state told me 'stop being silly and calm down- you are only making things worse'. I was shaking and my teeth were chattering, I was having an reaction to the dye used in the scan, and a reaction to the news I had just received in a busy hospital CORRIDOR- I wanted to scream at him, but I couldn't breath let alone form words. How was that helpful? Did he even think before he spoke? What I needed was someone to acknowledge what was going on for me, to tell me that I was having a reaction to the dye, to acknowledge that what I had been told was a lot to take it- to explain to me what that meant, to give me support- not to tell me to stop being silly- being silly was I?
For more information about how you can get and give support to those affected by thrombosis join Lifeblood Buddies here
Help me, help you, help others, help themselves
Dr Simon Noble Medical Director of Lifeblood has had his research paper published in the British Medical Journal which can be read here on the long term psychological consequences of symptomatic pulmonary embolism. I am so grateful to him, his colleagues and the participants for doing it. It highlights an area where more research needs to be done, and shows how important it is to give and hear the patient's voice. The medical professionals we meet along our journey can hopefully offer us the information that we need regarding the procedures, medication and condition we have, however what they can not do is tell us how to feel, nor can they rob us of this. I remember after having my CT scan in a busy corridor, sitting in a make shift wheelchair with leg extension, as I had my leg in a locked knee brace, feeling scared, confused about what was happening and unable to breath. It was there in a corridor that I was told I had multiple PE's, I was in a state of shock, feeling scared and unsupported I will never forget what a doctor seeing my state told me 'stop being silly and calm down- you are only making things worse'. I was shaking and my teeth were chattering, I was having an reaction to the dye used in the scan, and a reaction to the news I had just received in a busy hospital CORRIDOR- I wanted to scream at him, but I couldn't breath let alone form words. How was that helpful? Did he even think before he spoke? What I needed was someone to acknowledge what was going on for me, to tell me that I was having a reaction to the dye, to acknowledge that what I had been told was a lot to take it- to explain to me what that meant, to give me support- not to tell me to stop being silly- being silly was I?
For more information about how you can get and give support to those affected by thrombosis join Lifeblood Buddies here
Help me, help you, help others, help themselves
