Take a deep breath and count to ten.
It’s not always what doctors or medical professional have to say it’s how they say it. The hardest medical news to hear, is definitely made easier by the fact that the person giving the bad news is really thinking about every word they say and how they say it.
In my experience it’s the other appointments involving the smaller things, the check ups, the “sorry there is no change” and worse of all the “we can’t find anything wrong “ (despite your horrendous symptoms)appointments that have been the hardest to bear.
Back when I was in my late teens early twenties, these where the appointment that sent me spiraling into despair, anger, unbearable frustration and hopelessness. The way in which a doctor had communicated with me and how I responded was always the defining factor of whether an appointment had gone well or not, regardless of what had been discussed.
It was this that would take days to shrug off and created so much stress for me when having to attend appointments.
NHS doesn’t get the credit or the resources it needs.
Now before I go any further on this topic I would like to make it absolutely clear I am the biggest fan of our NHS and of the brilliant work that goes on. Within a system that is over stretched, under funded and doesn’t have the amount of staff to truly meet the need of the amount of patients. I am fully supportive of Junior doctor and the nurses that are fighting for their employment rights, patient safety, higher wages, better working hours, conditions and generally more sleep.
They have to dedicated their life to the NHS and in return they are being slogged, over worked, under paid and under valued.
It is this system I blame for my negative experiences, during umpteen appointments, in different departments and different hospitals. Not the individual receptionist, nurse, doctor, registrar or consultant whose attitudes and approach, have in the past have sent me crazy and into the darkest of places, pushing me to respond in unhelpful and sometimes blunt rude ways.
Communicating with a god complex
I am talking about this topic today as I attended an outpatient appointment in cardiology this week. A check up, to see if the pesky clots squatting on my repaired heart valve have gone. I knew it was unlikely as all attempts to thin my blood so far have failed. Long story short they are still there. But finding this out involved meeting an exhausted registrar who questioned everything I told him, presuming I had the information wrong until he verified it on his computer screen.
Now he wasnt rude, just a little patronising with an air of boredom. I also had to have an echocardiogram and was greeting by a brassed off radiographor as it was five o’clock and she didn’t understand why I wasnt being sent an appointment for the scan at a later date rather than having it at the end of her day. She did say “it’s not your fault” but then its was all a bit uncomfortable, which is great when you have to then sit with your top off with the same women for an hour. I have to say her attitude and approach did change when she proceeded to find things not quite right.
My point is both professionals made me feel rubbish and a bit of a nuisance.
A bit of background.
Now even to me looking back at this stuff it all seems a bit hard to believe. So you are going have to trust me every word I tell you is the truth. My terrible relationships with registrar’s and consultants developed during my nine-year battle to get an endometriosis diagnosis . That was nine years of appointments that involved trying to convince whichever registrar I had the joy of seeing that my monthly circle was by no means normal and was in fact ruining and taking over my life.
With three-week periods, excessive menstruation, debilitating pain and PMT that made me crazy or miserable. During that time I was patronised, doubted, phobbed off and made to feel like a hypochondriac that couldn’t handle her periods. It would take me days sometimes weeks to get over the upset of these appointments, the despair I felt at not being believed, sometimes I would dwell on the fact that my frustration and upset had led me to lose my cool and be rude in return to the doctor talking down to me.
No diagnosis meant no treatment so life was a struggle and a continuing battle with my GP and gynecologists. In the end my sister after lots of reading and researching on my behalf was adamant that I had endometriosis, which gave me the knowledge to truly self advocate. In my opinion this is a vital skill to learn when navigating the chopping sea of a medical journey.
“No Joanne those are side effects, you are fine.”
When I did finally get an endo diagnosis and luckily for me a treatment in the form of a monthly Prostap injection. I started experiencing symptoms that I knew were not normal for me. So I was back trying to convince the doctors that surely my crazy night sweats, pains in my legs, dizziness and overwhelming fatigue wasn’t normal! Again faced with the patronising, annoyed attitude from GP, gynie and even on two occasions A&E doctors. All insisting that I was fine and my symptoms were all side effects. That this was the cross to bear for not having the extreme symptoms from Endo. The Month leading up to my first stroke I actually saw 16 different medical professional. Another vital skills is persistence, it’s your body if you know somethings wrong don’t give up trying to find out what.
“You can’t talk Joanne because you are stressed” said the A&E doctor
On the day of my first stroke, unbelievably I was advised by A&E doctor to go home and rest. My symptoms of speech difficultly must have been brought on by stress from uni work or something. I remember her saying “being put in a ward with old people will only stress you out further”
In hindsight all that was absolutely crazy and so was the fact that I did what she said. Thank god a very close friend wasn’t happy with this and insisted on taking me to my parents who immediately took me to their local hospitals A&E.
I was diagnosis with having had a stroke as a result of a heart infection which had also done so much damaged to my mitral valve it was left flapping around. The cardiologist said that had anyone bothered to listen to my heart medically trained or not they would have been able to hear something was seriously wrong. But none of the doctors in the month leading up to my stroke had, they were too busy believing I was having side effects from my injection, they didn’t even consider anything else.
My Fair share of “trust me – I’m a doctor”
As you can see I have had my fair share of doctors who believe they know best, believe they have the answers and us mere mortals they are treating know less about our own bodies than them. And yes this is true, they have the experience, knowledge, they have science, technology and tests on their side. It is also fair to say every doctor has probably experienced patients that are over the top or convinced that something is wrong when it’s not. But they are human and sometimes they get it wrong. They are too exhausted, to overrun with patients that they talk down to us and only half listen especially if they have decided on a diagnosis regardless of what you are saying.
I understand to the cardiologist I saw this week clots in a repaired heart are a mere nuisance, a minor complication rather than a matter of serious urgency. I am sure he saw people in his clinic that day whose hearts were in a much worst state than mine. I get it, I even understand it, I forgive and even sympathise.
I also know that a dismissive attitude, not being believed by doctors, or listened too and the lack of eye contact or time can be the things that sends a patient over the edge, from dealing with the stress of being ill into the depths of despair.
As patients we wait months for our appointments, hoping they will give us the answers, treatment, cure, from our illnesses pain and fear. So when that appointment goes badly and you are shepherded out the door feeling like a child that has only been able to sit on the edge of the conversation and scolded for trying to join in. It can feel that your life is over, you have waited all that time for nothing. no steps forward, just another appointment to wait for, to hope that it will be the one that brings wellness.
Wonderful experiences too.
I have had lots of wonderful experiences in appointments, I have been diagnosed and given treatments that worksed saved and improved my life and well-being. I have met lots of medical people who listen and speak to you as an adult, mostly nurses I have to admit. I have had good appointments, bad appointments, like my most recent cardiologist one, that I have walked away calm, in control and dealing happily with the outcomes however pants.
However, If I am really honest it’s because I have changed. I have changed how I approach my appointments, the medical people I have to interact with and mostly how I respond to them when in my opinion they have been a bit patronising and with a bit of a god complex.
Learn from my experience.
So if you can learn anything from my dissappointing experiences and not have to go through them yourself let it be this, you can’t change how others behave especially those doctors who have an heir of superiority. But you can change how that makes you feel, the effect on you and how you respond to them.
By planning, practising, and learning coping strategies that work for you. By changing how you perceive doctors and the NHS as a whole. By being prepared emotionally by valuing the input you have in respect to your own body. By being armed with knowledge and written questions.
I will be shortly adding some of the strategies I use and the things I do now to stop myself spinning into angry despair, either at or after appointments and to get the most from these appointments. Hopefully there will be something that will be useful to yourself or a loved one.
Please feel free to share your experience or thoughts in the comments box.