That was me.
I didn’t think to ask if anyone else had experienced the pain I feel after cold water swimming – I do a lot of that.
Turns out, after a passing comment, and a day of feeling that someone had put a hammer to my nipples after a swim, that it’s a thing! Nipple vasospasm is something that’s talked about in breastfeeding but not so much in non-breastfeeding situations. Turns out, if you’re on the thin-ish side, have issues with Raynaud’s like phenomenon (difficulty with circulation in extremities in this case) and you get cold for a long period of time, you’re more likely to be pre-disposed. I’ve studied this in my lactation training but didn’t even think of it as an explanation for my pain! I’ve had it for years, one of the many byproducts of cold water swimming along with the hypothermia shaking and bad hair!
So, why do I share this with you?
Any time I experience pain, new symptoms, or something unusual, I like to turn it around and see it as an opportunity for me to gain more empathy as a practitioner. When I experienced panic attacks for the first time in 2013, it was horrendous but I have SO MUCH MORE UNDERSTANDING for my patients now.
Having this experience last week (with the nipples!) I wondered if that’s how my Ehlers-Danlos (EDS – connective tissue disorder that can mean chronic pain and instability in joints – amongst gazillions of other symptoms) patients feel? I wonder if it’s how patients feel who’ve been moved around doctor after doctor and told ‘I don’t know how to help you’? Even worse, if told ‘there’s nothing wrong with you’.
The average time for diagnosis in NZ for EDS is 12 years.
Imagine that? You’re in pain daily and multiple practitioners tell you that it’s in your head or they don’t know why. Imagine you’re on your own, no-one else in the family is experiencing what you are dealing with on a daily basis and you don’t know of any friends who can relate to it. I reckon that must be awful.
That’s why I feel so passionate about changing the situation in NZ for this ‘rare disorder’ and getting these patients help sooner. That is why we are becoming a Hub for EDS NZ.
So, when my friend, with whom I confided that I was shocked at how painful the vasospasm was after my swim last week, said, ‘oh I get that’, I cried. I felt instant relief and could make a plan.
I reckon this is the way forward for healthcare.
How would it be if our practitioners said, yes, I hear you. Maybe they know what it is, maybe they don’t. It doesn’t matter. It matters if they believe you and can find an avenue to make a plan. Imagine if we, as practitioners, listened first. Imagine if we WAITED to make a plan after we LISTENED.
Let’s get rid of the ‘it’s all in your head’ and ‘I don’t know how to help you’ scenarios.
These stories are too plenty.