Iatrophobia (White Coat Syndrome to the max)

[FMLpassthegin]

Has anyone experienced this and overcome it? After traumatic experiences as an in patient and outpatient I have PTSD and an extreme fear of clinicians and medical settings of any kind. I cannot attend any medical appointments, answer or make calls to my GP surgery let alone a Dr. I cannot go to a hospital for anything be it a blood test, screening, (no fear of needles, blood just the people, the place). I can't even visit loved ones in hospital. Emails/letters from them send my heart racing and me into fight/flight/freeze. NHS blue and white signage alone creates anxiety,

I've had therapy, hypnotherapy and EMDR, take anxiety medication and I'm still stuck. I must seem uncooperative/rude when I don't answer their call - but I literally freeze and stare at my phone ringing unable to pick it up, my heart pounds. I cry. When it stops ringing I turn my phone off so I don't have to see the voicemail notification and wait until I can feel together enough to listen to the message.

I've tried to make myself look at the buildings, sit in the car parks of the surgery or hospitals in person. I've tried just visualising via EMDR but as I know that it is all leading to making me go across the threshold at some point my irrational mind is says no way, not safe, can't do that. I am in good physical health and don't worry about that as I don't get sick often but I have repeat prescriptions which become trickier to work around when they have to be reviewed periodically.

I practice grounding exercises, breathwork, and workout, do yoga and activities to support nervous system regulation, - walking the dog, mindfulness etc. It is helpful for other anxiety triggers but when it comes to this, I seem to be triggered too quickly - I hit full shut down or flight in a flash. I've tried the feel the fear and do it anyway, exposure approach and ended up a liability (passed out, seizing...) confirming that's no do-able and putting me off more.

I've never had any kind of 'phobia' until now and I can't believe this has got 'so big'. I don't know how to overcome it. Does anyone know of a way to conquer this, is anyone able to relate to this? Has anything helped?

I get this at the GPs but I'm 10 times worse at the dentist. Recently I was being assessed for sedation for an extraction and they took my blood pressure. It was 160/90 ! Usually at home it's 120/80. I can't seem to do anything to stop it.

This sounds so so difficult OP. EMDR is the gold standard treatment for PTSD so if that hasn't worked did the therapist say what else they would recommend when that ended?

My son has medical PTSD and is currently having EMDR for me now very very slowly as he's only a child with autism so I can't say if it's working or not as yet.

I hope your son has success. I’m also ND and the EMDR has been v slow going -needing to be adapted a bit because of it. I’m over a year in and still doing it but the prep stage was v long and even now I find “containment” difficult. I know it’s meant to be the gold standard so I feel all the more of a failure that it hasn’t yet made me any less reactive. I feel such an oddball - it is so irrational now - my logical mind knows it but my nervous system just isn’t playing ball

ND people are 40% more likely to end up with PTSD after a traumatic event than an NT person according to research so you're definitely not an oddball I can promise you that.

My son's been doing his EMDR for 8 months but like you the prep took a while too and not every session he does processing depending on how bad of a week he's had. I'd say if you're still doing the EMDR then it hasn't been a failure as of yet. What does your therapist say about you still not feeling any progress?

I have this from a very traumatic series of events in a hospital leading to the death of someone I loved dearly. Can’t even phone the doctor now without flashbacks and fear. It’s horrible.

sounds similar to my sessions - some weeks not processing just discussing the week - she says it will be slow as there is years to process and so many connections and I am very slow to feel safe enough and to reach a regulated enough state to do it, and can dissociate -and there are so many linked rabbit holes…and my attention veers v haphazardly.

I’m sorry that happened to you and can understand that would make it hard. I hope things get easier in time - no advice but knowing you are not alone in this from seeing this maybe helps x

Yes I think a lot of people don't realise that the likes of CBT is around 12 week sessions but EMDR is a much longer process and I think in the long term is supposed to the best on offer so I'd keep going with it as much as you can.

I made an attempt to visit the surgery in March when my GP suggested I gave it a go and she could come and meet me outside and have the appointment outside with her and not go in. She told me she had left a note on the system so that when my name came up staff would know that I might have issues with m speech and that I would wait outside and not wait in the waiting room. However, despite leaving a note on the desk explaining I'd arrived and messaging them via email that I was waiting outside, the staff didn't acknoledge either message and so I was waiting outside for 40 minutes - I assumed the GP was runnign late but it was simply that they never told her I was there. The anxiety of waiting so long became overwhelming and I ended up shutting down, losing my ability to speak or to walk and severe tremors setting in. A patient passing on their way into the surgery alerted the staff that there was a woman outside 'shaking' and unable to talk and they came out and because I coudn't speak, immedicately called an ambulance despite me pointing to my medical bracelets that state I don't require this and what to do when this happens. They kept shouting louder at me as if I was deaf simply because I'd lost my speech - again my bracelet says this is an issue and to ask me to tap or nod to answer questions with yes /no answers. They then tried to manhandle me into the surgery which I really didn't want to do, ignoring the notes on their screen telling them that I cannot wait inside. I'm AuDHD and hate being touched by strangers. The experience has made it so much worse. I felt so humiliated and violated being pulled under my armpits towards the surgery unable to stand thanks to them not reading my ID and medical bracelet to look at my notes on their system or acknowledging the physical note on the reception desk or my email. The whole point of the appointmet which was initiated by the GP was to try and help find a way for me to attend and build confidence to enable me to access healthcare. By the time she came out there was no possibility of me being able to speak or attend and she asked the staff to take me back outside and allow me to calm down privately and said she would write to me - which she did. She and the reception team wrote with apologies and assurances that they would recognise me next time and follow the instructions on their system. I cried for days afterwards feeling so disappointed in myself being unable to regulate and coming away feeling all the more unable to contemplate attending another medical appointment ever again. I've now developed what is likely a localised dermatological infection and so took pictures and video and emailed the surgery requesting that my GP could at some point as a non priority, non urgent issue at some point read my note desribing symptoms and attached photos/videos . I said I was not expecting any quick response and therefore if necessary maybe they could book an appointment on my behalf whenever there was a slot free in the coming weeks for the GP to read my email and respond rather - I didn't want to queue jump or seem as if I expected an 'on demand' response. I thought that there was sufficient images and description that there wouldn't be need for me to attend. I received an reply straight away saying "Please book a routine appointment" Arrrrrrrrr. I can't do that! Underneath it says 'Reception team has closed this Message". So I guess I just have to put up with it as I can't email back saying "Sorry I cant'/won't do that" as it seems as if my email has made them think I think I'm too self important or something to make an appointment like everyone else. The thing is that the GP had told me to contact her via the portal and she would message back and that this would be noted on the system as she knows I wont' call or answer the surgery calls because of the fact I lose my speech. But now it seems that isn't possible either. I'm not sure what I wanted from this post really, maybe just to vent as I'm so frustrated that something that should be simple just isn't.

I would email in to the practice manager and essentially copy this message in. Get them to put something in place as when they get involved, you often find things are done when reception and doctors dont make sure the systems are suitably updated.

You could tell them that your requests should never be responded to with book a routine appointment because you simply cant.

Would a video appointment be better? This is something my GP did during covid and I am sure for circumstances like this, is something they could set up if easier. Or a phone appointment? I know its still an appointment but it may feel a bit safer being at home and may help a bit. But the Doctors should be working with you and putting something in place.

I am so sorry you are dealing with this, I get regular white coat syndrome and thats frustrating enough when you are having to get meds before a surgery as your heart rate and BP are so high. I cannot imagine what this is like to deal with and I hope the Doctors can work towards finding ways to help but you still need medical care and they need to help find solutions. I really think contacting the practice manager is the way to go.

Thanks. They don't do video appointments. Phone appointments yes but the issue is that I lose my speech. That's why we had tried to still do an in person appointment last time. The GP had message with me and established that if I lost my speech I could use a pen and paper to try and write or nod. She had deliberately made me the first afternoon clinic appointment so that I wouldn't be kept waiting and have time to stress out. But as the staff didn't notice or register I'd arrived the GP had thought I had bottled out of the appointment. I could email the practice manager as you say but what if the message was from her in the first place? I don't know and I'm worried she might respond with saying "we can't/don't have time to manage patients this way. Make an appointment like everyone else". I'm worried she will think I'm behaving like I think I'm entitled or expect special treatment, am high maintenance and I'm already so wary of being associated as a 'high drama' patient because of the number of panic attacks I've had there that have led to me losing motor control/seizing and being stuck there until my body starts working properly again.
I would suck it up and try and overcome the phobia but the risk of having a seizure if I don't manage the PTSD symptoms is high (I'm waiting on an online specialist seizure management clinic referral that is around another year away). I am nearly a year seizure free now due to avoiding these kinds of situations. I have made my life so small via avoidance because I cannot afford to seize. A seizure puts my driving license at risk for indefinite periods and I cannot afford that as I need to drive for my jobs.

I don’t know how to help you but my daughter has this and people in healthcare, particularly people who are supposed to know better, are completely oblivious to it. They are constantly asking her to participate in this and give her views on that and can we just get this observation done? Absolutely horrific to deal with so I feel your pain 😣

I also didn’t know it had a name so thank you for that

I am the same. It is horrible 😢

It really is horrible. And it was caused by the NHS system - they’ve put me in physical danger, and physically and psychologically harmed me and whilst I know that’s not the fault of every person in the profession my body reacts otherwise and hits fight or flight and goes into threat mode no matter how much I try to rationalise and tell myself I am ok, safe, can cope etc. I obviously don’t inherently believe that anymore I guess and every time an appointment goes wrong it just reenforces the mistrust. I wish I could get past it I really do. Fortunately I’m rarely physically unwell but the misogyny/stigma I’ve experienced has been so continual and I don’t see it changing. . The dismissal and harm to date makes it very difficult to figure out how I can overcome my response. When the GP and reception make promises that they will help me to access care via the portal and then I get stonewalled this way or the staff ignore the accommodations and notes on the system to be put in place I just lose faith entirely. If I could just achieve some positive non threatening experiences there it might help me manage and then not need to communicate differently once my anxiety reduces but it just doesn’t seem it is realistically possible when they can’t stick to the plans. I try every alternative to avoid using the service. I’ll probably start googling natural remedies I guess. I’m sorry for all of you that are experiencing the same thing. It’s awful and makes you feel such a freak: and it’s such a vicious circle when you can only get help for the source of your fear via the people that cause it. It feels like saying “go get help for your abuse from your abuser”. Who would say that to someone? But what the answer is I don’t know. DBT/EMDR/CBT etc - I’ve been in therapy trying for years now.

Honestly no one can say what they will respond with but I highly doubt they will say they cant do anything. They have a duty to help and you have a real medical issue here that is being handled poorly and that is causing your issues to get worse.

The practice manager will be the right person to look at the current processes, see why they are failing and look at how they can help and its not unreasonable to ask them what is going wrong and how can you ensure it doesnt happen again.

It has to be worth a try if you are at the point of giving up using the GP anyway.

I understand except mine is related to the dentist. I need sedation for treatment- I’m so embarrassed but it is what it is. I have a friend who’s decided to remain childfree due to a phobia of needles.