It’s still raining

I don’t know how long it takes for something to be obvious. How many individual accounts of the same story? How frequently do we need to see the same symptoms?

When do they, the people and institutions in power, connect the dots or follow the strings?

More and more often, journalists and celebrities are publicly noting their health struggles. I’ve mentioned it before; they don’t have to be vocal about their health. No one who isn’t an elected representative is beholden to the public about their private lives. But, the tides of health being a subject of shame seems to be shifting. I’m ready for it. The louder the better.

I’ve read a number of stories recently about women who were suddenly hit with Postural Orthostatic Tachycardic Syndrome (POTS) symptoms. For some it hits in puberty. For others, they are adults. Regardless of age, they tend to finally seek medical help when their symptoms don’t stop building. Unsurprisingly, these people are typically met with incorrect diagnoses and general sexism from medical professionals who see all women’s complaints as histrionic. As the months and years go past, these women are dismissed as they are developing new symptoms. Most commonly, Ehler’s Danlos Syndrome (EDS) issues and gastric distress. There will be complaints of migraines and fatigue. People’s lives are turned upside-down. They are thrust out of their upwardly mobile career paths, unable to complete school, helpless towards their partners and children, deemed broken and useless.

Yet, the doctors don’t look at the big picture! Medical researchers aren’t scrambling to figure out this massive uptick in parallel symptom reports. The world’s health organizations watch us with a weary eye as we cry out in pain and beg for help. Why are we being ignored?

It starts when we are young. Most of us who have EDS and POTS are not diagnosed for 10 years into our symptoms being loud. While current science points to these issues being genetic or budding when we are children, pediatricians and parents are blind to the physical presentations. Children with colic will probably have long term stomach issues. Young kids who have “sensitive” tummies or prefer not eating might be suffering with gastroparesis. Hyper-flexible children aren’t just pawns for dance and gymnastics. EDS can be lurking. Frequently being tired, out of breath after exercise, and dizzy doesn’t mean a kid is lazy. POTS is a real possibility.

The contradiction to this plea for more awareness of congenital and early-starting conditions, is that children are often over-diagnosed in Western medicine. We are quick to name a problem and prescribe a pill as the solution. What needs to happen is a turn towards a scientifically minded culture that allows doctors to acknowledge the high potential for a lifelong disorder but to prescribe lifestyle modifications that will help the person have an existence with less symptoms. Of course, if medical interventions are needed, then by all means. Awareness is the first step. Let’s start there.

For any of this change to happen, medicine needs to prioritize female health. They need to be looking at these florescent signs flashing in the dark showing the many linked conditions women face. We should be treating the body as an entire system as opposed to individual unconnected parts. Most importantly, doctors need to be LISTENING and BELIEVING women when they talk about their own bodies.

I’m not naive to hypochondria or modern attention seekers who use social media as a sympathy bank. There will always be people who aggrandize and mislead. Sometimes people don’t understand their own bodies and they give bad information to medical pros. To help mitigate those outliers, we should be starting children out at a young age with a routine where they center their body knowledge around trust and being accountable for it’s maintenance. I don’t think we are far off from these goals.

How do we implement these changes on a grand scale? Who do we need to talk to finally be heard? Where are all the freak’n umbrellas?! Those of us that are broken into a million pieces are still willing to fight. We will keep trying and carrying the “annoying”, “bitchy”, “unsufferable” titles  as we make noise in the places we think people will hear us. Women’s quality healthcare should be a global priority. Children’s quality healthcare should be a certainty. We need to start somewhere. Let’s start with the obvious.


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