Medical gaslighting is a term that I have seen around on social media quite a bit over the last year or so. I would read stories about patients experiences of poor medical care or incorrect assumptions made by medics which have been devastating for the patient and feel blessed that this has never happened to me and that I am really fortunate to have a supportive team looking after me.
This was until this year. I have put off writing a post about my experience in too much detail because to be honest I am still coming to terms with what has happened and am still searching for that solution as day to day I still have a non healing wound that needs cleaned, packed and dressed by nurses.
Today however when reading Twitter I found myself getting really angry. I follow a lot of medical accounts including NHS Lothian and a few disciplines who have accounts too. Today NHS Lothian launched their annual What Matter To You week. A week focusing on the needs of patients and what matters to us when in hospital. I feel so angry as one speciality within the hospital really does not care about what matters to the patients and will write false information in their notes.
My last admission to hospital in April was nothing but horrific and I now realise that what happened to me was medical gaslighting. I am aware I am a frequent user of the NHS due to my health and I have always felt supported and cared for whenever I attend wether it be A&E, inpatient, out patient or primary care. Now this is the reverse, I find myself on edge, reluctant to say anything about how I am really doing for fear of what might be written. I have also found myself with so much anxiety whenever I have appointments which just now is at least twice a week for my wound.
While in hospital in April and before it I was at the end of my tether with this wound. I was sick of the never ending cycle I was in. I was finding it so hard to get my head around the fact that this is something I cannot self manage and that I had to rely on nurses to look after the wound which was sometimes on a daily basis. I have been taught how to self manage my health and now I couldn’t. I am also someone who likes to have a plan and an understanding of what is going on and why but with this I couldn’t. I actually asked to speak to someone when I was in hospital as I was so upset and overwhelmed by it all. It was good to be able to speak to someone who was not a Dr, who just let me speak and voice my concerns and frustrations about it all. This was the only positive out of the admission.
I felt that I was being judged by the surgeon who “did” the 3rd surgery on me. I didnt feel easy when I was signing the consent form with him. There was just something a miss and he was very dismissive of my questions and concerns. Everything went from bad to worse and I actually walked out the hospital 5 or so hours after the operation. I got a taxi home because I felt so vulnerable and unsafe in the hospital. Never in all my admissions have I ever just walked out, not telling them I was going, just leaving.
They tried to tell my parents I was a vulnerable adult but I question that vulnerability when they let me (someone who has severe asthma, relies on a stick to walk, and has had 3 abdominal operations this year with one of them being a matter of hours before) walk out with my bag and I was also able to get all my medication out my pod which had not been locked- this bag also contained controlled drugs (someone else drugs were also left in my pod which I took accidentally too- I didnt realise at the time but threw them out once I discovered them) and get off the hospital site as well.
The next day I was persuaded to go back to the ward and see the Dr to discuss everything. I was told it would not be the surgeon who caused all the issues however it was. A lot of things were said that made me think that he thinks I am doing this to myself and causing my abdominal wound and the infection in it too. I had no proof of this but comments that I would not be offered any further help, and they don’t know the cause of what is going on but perhaps I knew something different. Of course this was just words spoken during a ward round and I could not be sure that this is what he meant although I strongly suspected this.
Getting my discharge letter about a week after I was angered. It really did not reflect the admission I had just had but it also said that I had suicidal ideation. I didnt- I said I was struggling to cope and would like to speak to someone. I knew I had to do something about this as I did not want this on my medical record, fine if it is true but it is not. I couldnt believe this but at that point little did I know the extent of the inaccuracies that had been written.
Despite intervention from the district nurses the wound had still not been healing so the tissue viability nurse came to review me and put a plan in place to hopefully help the wound heal. I now regret this, not for her input but because I found out what else had been written in my hospital notes as I was given a copy of her report. Ever since reading her report I have not been able to sleep properly, I feel like any contact I have with health service I am being judged and they will be talking about me negatively and questioning my need.
I found out that in my hospital record the Dr has written that there is no reason why my wound is not healing and that there has been intervention from myself to negatively impact the wound and prevent it healing. It went on to say I also had behavioural and psychological issues. There were other minor inaccuracies such as they noted I had been dressing the wound myself (I did it once when I walked out the hospital to go home because they had put a dressing I was allergic to on and it had to come off but the nurses refused to on the ward because the surgeons had said no dressing change was needed). I didnt know what to feel when I read those things about me. I didnt know wether to laugh, cry, scream or what, I was also numb in disbelief that someone cold write such false statements about someone.
It made me see what power medics have over their patients. I have no ability to change what has been written. It is there forever, new notes can be made to say the statement is false however this would be done as a new note, it won’t mean the inaccurate note is removed. These words can have a devastating impact on the patients future. It has had a devastating impact on me. I cannot get away from it. I cant stop thinking about it. It makes me want to disengage with medical professionals but then I cant as I am now on home therapy for my biologic treatment (I started 3 months ago, I cant even enjoy the fact I have started a treatment for my allergies and spontaneous idiopathic urticaria because I am so scared that this might get taken away because of what has been written in my notes. No amount of reassuring from the team is helping at all, I cannot get rid of the fear.
I want to be able to question the Dr that wrote all these false things and left me high and dry. They have left me in a very fragile state and my trust in the NHS right now is broken. I have always been a champion of the NHS but right now I have no faith in it. I want to know why the Dr wrote those things, what evidence does he have that I am essentially harming myself by making the wound worse and getting it infected. Why did he not speak to me about this and ask me or tell me his thoughts. I also want to know that if he believes these things to be true then where is the intervention to prevent me from doing this in future, prevent me from hurting myself further or worse. I was just left with nothing which I guess if these things were true and I did harm myself more and cause great harm then it would be his fault for potentially knowing something and not acting. I want to know what the behavioural and psychological issues are apart from the fact that I walked out the hospital not long after surgery (but anyone reading my notes will see this is very out of character for me). I need answers. I feel like I cant move on or begin to get trust in the different Dr’s that look after me back. I don’t know the best way forward. As a patient we have no power shy of writing about our experience online for others to see but all this does is raise awareness and make patients who have experienced similar know they are not alone.
The damage that a few sentences by one Dr has been untold. I cannot put a limit on the damage that has been done. Just because they cant find a reason or a cause for something does not mean the patient is at fault, or the patient has caused it, they just need to keep looking and consider all aspects. Abdominal wounds are hard to heal, add in the fact that I am immunosuppressed due to oral corticosteroids and inhaled corticosteroids and immunotherapy all add to a poor ability to heal and prone to infection. Right now I need help. I need understanding and someone to listen to me to help me find the right way forward and a plan to get to the point where the wound has healed.
This has been a total ramble but I had to get it off my chest and want people to know they are not alone. Anyone can be at the receiving end of poor care and then act in ways which is out of character for them which will most likely be due to fear and vulnerability.
What I would advise to any future medics reading this please speak to your patients, ask them questions, if you cant find a cause explain this to the patient and explain that you need to rule out self harm for example. I had no chance to give my voice to this and I wish I did. I would be angered at being asked or even there being a suggestion of me doing this to myself but I would prefer the question than it being put in my notes. I would say make sure if you are going to write something that you have not spoken to the patient about just don’t write it. you may not think a patient will find out what you write but they might and if your statements are not accurate the damage done goes beyond the episode you are dealing with. You will have so much power, please don’t abuse it, make sure you build a good relationship with your patient as you will get more information from them and build a better picture of what is going on.
To other patients who are reading this, I wish I had an answer for you and I wish I could say that situations like this will never happen again but sadly I cant. I am scared that this can and most likely will happen again to other people. Once I find a solution I will share it here. If anyone else has a solution please let me know.
I thank other patients who have shared their story of medical gaslighting as it has made me understand what I was going through. The name that can be put to what I experienced. I am gutted others have had such a horrific experience as well and hate that you have been through it but it has helped me so much.