As the title states I want this blog to be something most of you can relate to when going through medical investigations whilst trying to get a diagnosis, or even seeing a new Doctor who doesn’t “believe” your diagnosis.
The way it makes us all feel is just wrong! This is something that needs to change!
I’m writing this as this is something I am currently experiencing whilst in the process of trying to figure out what my body is doing. After 3 days in hospital with intense abdominal cramping, vomiting and non epilepsy seizures(that’s as far as we’ve gotten with that diagnosis is ruling out what it’s not!)….The neurologist had finally arrived to see me, I had seen him once before and he seemed like he was going to be great, but when he came to see me in hospital he was the rudest by far. He couldn’t believe they had me on oxygen or that I would be in hospital for such thing! After completing the 2nd EEG he had ruled out epilepsy…in which my former specialist had already done and had already given him a letter requesting further testing as she believes I have a build up of pressure around the brain. Now you would think a fully qualified neurologist would know that epilepsy isn’t the only cause of seizure activity, I’ve done only a few months of research and know that, however he continued to give me the “Its caused from stress and it’s in your head ” speech that most doctors turn too when they are out of their depth!
I was in shock! I didn’t fight back, I didn’t ask many questions, I was just devastated… I had my hopes up that this great doctor I seen last time was finally going to be seeing how bad my condition has gotten, from 1 every second day, to daily and now 2-4 seizures a day! I was looking forward to him coming and treating me as an inpatient so I wasn’t alone all day whilst having seizures risking my safety at home and that he would be able to test to get answers and treatments…… All that hope and desperation was just gone!!! I was just silent, no words to describe how I felt, besides belittled and infuriated!!! I had put my trust in him only to be disappointed in the biggest way possible. I was discharged with no answer other than stress and no treatment besides “go talk to a Councillor until I can review you in a few months” and feeling like I would never get answers. That I would have to keep living like this with no hope, as he is the only neurologist in the area.
This feeling we get is so wrong, feeling like there’s no hope or that we won’t get answers needs to stop, we need to stop feeling embarrassed because that’s how the doctor who we trusted should be feeling not us! We shouldn’t feel shocked as it happens so often. I’ve had it happen multiple times and been strong but in that moment I lost that strength and lost my conviction to do what was right for me. Shortly after he left I regained my strength and called on my doctors and nurses for direction and their opinions, they too after seeing my seizures first hand all knew he was wrong and told me to see my GP to organize further testing and a second opinion from the nearest city.
I then got my determination and hope back, I realized we need to take back control!
We all need to fight back, to put our foot down, question their reasoning and to be our own advocate! We know our bodies better than they do, not everything will be a “text book case”, we need to do research ourselves, not feel ashamed, as we know they are wrong! I had to do so when I was covered in hives daily and no doctors would listen, I kept getting told “just take an antihistamine and calamine lotion” or that “it was an allergy” It took me seeing 7 different doctors dismissing my pain, constant itching and impacting my life for me to do enough research which took 3 months to then contact a London based doctor who wrote most of the research I could find on Auto immune urticaria, I emailed him back and forth and he emailed me all the tests my doctor needed to do. Out of the 7 doctors, I seen the one I knew who would run tests for me as she was just apologetic for not knowing what it was instead of belittling me. Thankfully I was right and the test result came back positive! Now yet again faced with the issues of these seizures, I seen another GP to organize some further testing and a second opinion after my hospital visit, after once again being belittled for questioning a neurologist who he automatically defended, without listening to me whatsoever and lecturing me on how little I know and how many years both the neurologist and himself had to study and train for. I decided once again that I was not going to let an incompetent doctor stand in my way of further testing, so I argued back to the point I was in tears, even though he kept dismissing my ideas, and even the letter with results from my previous good specialist (unfortunately we moved or I would still be under her care), plus him pulling my husband away whilst I was having an seizure to tell him it’s just stress and he needs to make me understand that! After all the fighting I got through to him well enough that he has organised the MRI I need to give me answers even though it was only to shut me up and said it’s a waste of my money… In which I replied, I will take my chances and if we do all further tests to no result only then will I accept it’s stress that’s causing it as it isn’t a coincidence it started after a brutal massage with neck manipulation and that I can even bring on a seizure from simply looking up or pressing a certain part in my neck (he didn’t want to hear a bar of it). He even suggested that I should just go back to my previous specialist which I ended up sending her an email and will have her CC’d in on my results. But in the end, I won because I stood up and fought for further testing and hope it will show him that I like many others aren’t textbook and need to be heard, listened to, acknowledged and shown compassion!!! I hope I help him to become a better Doctor so he can save more lives, through doing those simple things!
Although the illnesses we are dealing with already make us feel weak we need to find the strength to fight back, teach the doctors that not all of us are text book cases, that they don’t know EVERYTHING, that they need to listen and show compassion instead of arrogance! We need to stop feeling ashamed, belittled and wrong because that’s how they should be feeling for mistreating us.. their patients!
I am not in anyway stating stress isn’t a cause for some illnesses and it is most definitely a trigger in almost all illnesses in which the two should never be confused! But until all other testing is done to rule out everything else it should never be the “go to” diagnosis for doctors, that is just lazy and incompetent and could cost so many people their lives via misdiagnosis and suicides. I hear too many stories of others waiting years for a diagnosis, not wanting to go to the doctors due to how it makes them feel shamed, too many peoples lives on hold because they can’t do what they used to but have no answers… And too many people that give up on life as they don’t feel like they can go on living in daily pain with no answers! This needs to stop, and I hope it stops here because we stop feeling the shame and belittlement and start fighting for our rights, start teaching these doctors one by one that they HAVE to listen to do their jobs RIGHT! I’m hoping I can help you to find the strength you need to do so, because this world won’t change, this cycle won’t change until we all do our part! So let us all start fighting for change, fight to be heard and treated as human beings!
As always I’m here for all of my readers and would love to hear your thoughts and your stories and help you in any way I can. So please feel free to contact me if you are in need of any help or advice, anytime!
#ItsJustStress #Changingtheworld #IncompetentDoctors #TeachingCompassion #InvisibleButStrong