How do you raise an issue with a medical professional without being seen as over-reacting and over-anxious?
A friend with EDS was recently referred for surgery. Knowing that poor or slow healing is a part of EDS, she raised the issue with her surgeon.
The surgeons response was to tell her to stop worrying, and that it would be fine. Perhaps what he heard was 'normal pre-surgery nerves' not 'well informed valid concern'.
Knowing that with EDS, this is not an answer based on scientific fact, she ended up having to refuse treatment.
Others in similar situations have had surgery - and been left with damage that could have been prevented/mitigated if their concerns about interactions with EDS had been listened to.
Years ago I collapsed with POTS symptoms. I didn't have a POTS diagnoses, but knew I had EDS and that POTS was linked. I tentatively told my consultant that I felt like I wasn't always getting enough blood to the brain (which is what happens in POTS) - it was dismissed out of hand. Consequently correct diagnosis and treatment was delayed by over a year. All because my description was seen as anxiety-based and over reacting, rather than a logical attempt to describe something I didn't really understand.
On the other hand, I have also experienced raising a concern and receiving a considered response.
I am an expert on my daily life and the conditions I have lived with for years, and have a pretty solid understanding of how certain things are likely to affect me. On the other hand, the medical professional will have a depth of knowledge in their area which far outstrips mine.
Yes, a patient’s query might be standard nerves, but it might also be an important issue that hasn’t been considered.
Together we can find the best solutions.
A friend with EDS was recently referred for surgery. Knowing that poor or slow healing is a part of EDS, she raised the issue with her surgeon.
The surgeons response was to tell her to stop worrying, and that it would be fine. Perhaps what he heard was 'normal pre-surgery nerves' not 'well informed valid concern'.
Knowing that with EDS, this is not an answer based on scientific fact, she ended up having to refuse treatment.
Others in similar situations have had surgery - and been left with damage that could have been prevented/mitigated if their concerns about interactions with EDS had been listened to.
Years ago I collapsed with POTS symptoms. I didn't have a POTS diagnoses, but knew I had EDS and that POTS was linked. I tentatively told my consultant that I felt like I wasn't always getting enough blood to the brain (which is what happens in POTS) - it was dismissed out of hand. Consequently correct diagnosis and treatment was delayed by over a year. All because my description was seen as anxiety-based and over reacting, rather than a logical attempt to describe something I didn't really understand.
On the other hand, I have also experienced raising a concern and receiving a considered response.
I am an expert on my daily life and the conditions I have lived with for years, and have a pretty solid understanding of how certain things are likely to affect me. On the other hand, the medical professional will have a depth of knowledge in their area which far outstrips mine.
Yes, a patient’s query might be standard nerves, but it might also be an important issue that hasn’t been considered.
Together we can find the best solutions.
Very well put Hannah :-)!
ReplyDeletePerfectly put as always Hannah! I have had this problem with new GP a lot.
ReplyDeleteKath
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ReplyDeleteWow, great post.
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