The purpose of this blog, is so I can vent, document and maybe help someone else with my struggles. Living with a Mast Cell Disorder is hard. Especially since there are some doctors who won't acknowledge it at all! Yes, I've seen some of them...and the damage it does when they make you doubt....horrifying.
So since this is my very first post, I found something that I will be presenting to all of my doctors, prior to treatment. It is exactly how I feel and what they need to understand:
Dear Doctors,
A young patient presents at your ER/clinic/rooms, with unexplained symptoms of chest pain and fainting.
What is you first response?
I'd hope that you'd investigate.
I'd hope that you would take it seriously.
I'd hope that you'd reassure your patient that you believe them, and will do your best to help them.
But sadly, this response seems to be the exception, and not the rule.
"You're just anxious."
"You're just depressed."
"You're too young for [insert illness of choice]."
"You just need to get out more."
"You're wasting our time."
This is what far too many patients encounter.
Do you know that your response in that moment can influence that patient's relationship with the medical system for years to come?
Do you know that your response can make or break that person's sense of self?
Do you know we come to you because we are scared?
Do you know we come to you because we trust that you can help us?
Do you know that you can crush that trust with an uncaring word or flippant attitude?
Do you know that rare, doesn't mean non-existent?
Do you know the tears we cry and anger we feel when we are casually and sometimes callously dismissed because you could not find the problem after some basic bloods and a quick check of our vitals?
Do you know how we second guess ourselves and avoid seeking medical care in the years to come because maybe you are right, and it is in our heads?
Do you know we now no longer trust the medical system because you, the expert, you who we imbue with hope and power, told us we were crazy or wasting their time?
Do you know many will fail to get the treatment they need because you made them feel like a hypochondriac?
Do you know many will lose jobs, relationships, lives, because they will no longer seek care for their symptoms for fear of dismissal or ridicule?
Do you know that even when we find a doctor who can put the pieces together, we are hampered by that one exchange we had with you?
Do you know that we mistrust the compassion and understanding we receive from that doctor because our trust was dashed by your indifference and disregard?
Do you know that we will spend years trying to overcome the damage you created in that one exchange?
Do you realise the power you have?
We come to you scared.
We come to you with trust.
We come to you with hope.
We want to believe.
We want to feel better.
You may not understand our condition.
You may be frustrated by a lack of clear results.
You may be overworked and tired.
But do not forget your power.
Do not forget that you promised to first do no harm.
Do not forget you are dealing with a person, not a bed number.
Do not forget that in that moment we are vulnerable.
A kind word.
Genuine concern.
A simple admission that you don't know.
Will build trust.
Will build hope.
See us as people.
See that there are real world, long-term consequences to how you interact with those who seek your care.
You have the power to make or break a person's entire experience with the medical system.
Remember that before you speak with your next patient and use your power well.
A young patient presents at your ER/clinic/rooms, with unexplained symptoms of chest pain and fainting.
What is you first response?
I'd hope that you'd investigate.
I'd hope that you would take it seriously.
I'd hope that you'd reassure your patient that you believe them, and will do your best to help them.
But sadly, this response seems to be the exception, and not the rule.
"You're just anxious."
"You're just depressed."
"You're too young for [insert illness of choice]."
"You just need to get out more."
"You're wasting our time."
This is what far too many patients encounter.
Do you know that your response in that moment can influence that patient's relationship with the medical system for years to come?
Do you know that your response can make or break that person's sense of self?
Do you know we come to you because we are scared?
Do you know we come to you because we trust that you can help us?
Do you know that you can crush that trust with an uncaring word or flippant attitude?
Do you know that rare, doesn't mean non-existent?
Do you know the tears we cry and anger we feel when we are casually and sometimes callously dismissed because you could not find the problem after some basic bloods and a quick check of our vitals?
Do you know how we second guess ourselves and avoid seeking medical care in the years to come because maybe you are right, and it is in our heads?
Do you know we now no longer trust the medical system because you, the expert, you who we imbue with hope and power, told us we were crazy or wasting their time?
Do you know many will fail to get the treatment they need because you made them feel like a hypochondriac?
Do you know many will lose jobs, relationships, lives, because they will no longer seek care for their symptoms for fear of dismissal or ridicule?
Do you know that even when we find a doctor who can put the pieces together, we are hampered by that one exchange we had with you?
Do you know that we mistrust the compassion and understanding we receive from that doctor because our trust was dashed by your indifference and disregard?
Do you know that we will spend years trying to overcome the damage you created in that one exchange?
Do you realise the power you have?
We come to you scared.
We come to you with trust.
We come to you with hope.
We want to believe.
We want to feel better.
You may not understand our condition.
You may be frustrated by a lack of clear results.
You may be overworked and tired.
But do not forget your power.
Do not forget that you promised to first do no harm.
Do not forget you are dealing with a person, not a bed number.
Do not forget that in that moment we are vulnerable.
A kind word.
Genuine concern.
A simple admission that you don't know.
Will build trust.
Will build hope.
See us as people.
See that there are real world, long-term consequences to how you interact with those who seek your care.
You have the power to make or break a person's entire experience with the medical system.
Remember that before you speak with your next patient and use your power well.
Donna
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