Earlier this week, I awoke to several friends messaging me:
“There’s a feature on the radio in an hour.”
“Turn on the news now.”
After washing off my morning zombie face, being barked at by my dogs, and making coffee, I finally looked at Twitter. At the top of the daily trends was that mess living in my insides: endometriosis.
It’s often like this. I get friendly nudges via my phone for any piece of news, report, or viral post featuring my disease. Whenever endometriosis is talked about, someone lets me know. I guess that most think I’m interested because I have the illness. Others probably believe I feel validated whenever it is treated like anything other than a mystery.
Honestly, I don’t tend to click on the links. And I never switch on the radio (as an elderly millennial I don’t even own a radio, but that’s beside the point). I just don’t want to read or hear about it. I can’t.
Living with a chronic disease can have a deep effect on a patient’s mental health. Sarah Hughes, chief executive of the U.K.’s Centre for Mental Health, recently stated: “Living in constant pain and struggling with daily life, with relationships, with conception and with work add to the burden for women living with endometriosis.”
It is a burden that has me saturated.
I live, breathe, and bleed this disease. Like with politics, my attitude on endometriosis research goes like this: “I’m taking a nap, wake me up when it’s over.”
I know my friends have good intentions. I am happy that they metaphorically bump their fists on my behalf. Of course this illness deserves more attention. The treatments we are offered are, quite frankly, poor. They don’t cure. They don’t even treat. We meet doctor after doctor until we hit the end of the road, either to be told there’s nothing to be done, or to be offered a radical hysterectomy.
The things I do want to hear about are plenty: Haim’s latest single, the drama on “RuPaul’s Drag Race,” and any sightings of Tom Hardy cuddling a dog. But I wish I could take a holiday from my illness. I’d pack my bag and leave my ovaries behind. Board a plane and not panic because I forgot the cable to charge my TENS machine. Walk through foreign streets without worrying whether the pad I’m wearing is thick enough. Go hiking without feeling a tug from my insides that would ruin my plans.
But that’s not how my life works.
With an illness like endometriosis, my tweets are a form of activism. I speak on podcasts, write columns, and regularly offer my insides to strangers to poke. I manage my disease daily, through diet, exercise, and alternative therapies. This illness takes center stage. I don’t get a break. I don’t get to listen to any feature on the disease and learn something new.
As patients, we need to speak up. But we also need others to speak up for us. As a community, we are let down by the medical field and our bodies. We want to feel like we’re OK. Supported. Cured.
We want to be more than a shocking headline.
Trending topics can drive positive action. After the features in the news, the U.K. government has announced the launch of an inquiry into endometriosis care. Regional governments have released statements pledging to do better.
Yet trending topics can disappear within hours, giving space to the next celeb mishap or cute viral video. We need permanent and meaningful steps to fix a way of life that for millions of us is not news.
Endometriosis cannot be a trend. It needs to be a treatable disease, once and for all.
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Note: Endometriosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Endometriosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to endometriosis.