Women with endometriosis are choosing to put variations of “endo” in their Instagram handles and bios as an empowering word to identify with. Since before Lena Dunham publicly shared her endometriosis and hysterectomy story, in the March 2018 issue of Vogue, hundreds of thousands of women have converged on social media, and the words “endo warrior” have become synonymous with advocacy for women’s health. RELATED: What Other Women Want You to Know About Endometriosis Lena Dunham Isn't the Only High-Profile Endo Warrior Your feed will become immersed in more than two million images of women sporting the color yellow in solidarity, bloated bellies during flare-ups, and body-positive postsurgical scars. Tap Into an Empowering Endometriosis Communityįollow the most popular endometriosis hashtags on Instagram - #endo, #endowarrior, #endosisters - and the results will quickly dissuade you from any feelings of isolation. For women living with endometriosis, the lack of awareness both socially and medically can create an isolating and disheartening experience. Would you add anything to this list? Tell us in the comments.Despite affecting 1 in 10 women of reproductive age, endometriosis is a disease surrounded by misunderstandings, delayed diagnoses, and hit-or-miss treatments. An alternative to this is just compliment me like I wasn’t chronically ill.Īlternatives: “It looks like you are having a bad/tricky day, is there anything I can do to help?” I want to be well but I’m not even on those days when ‘I look well’ I’m still in pain. When I get told I look well, it feels as though it’s said as a compliment which further reinforces the stigma and guilt felt around having a chronic condition. Chronic fatigue and painsomnia nights with an endo belly on top, it’s a solid look lol! I have often worked hard to manage, so trust me I feel much worse than I look! I’ve heard both far too many times, please stop telling me when I look bad, I already know. “That’s a really rough time, you’re dealing with a lot, I’m sorry.” I was in a lot of pain on a lot of painkillers.Īlternatives: Comment on how bad it is, acknowledging that you hear us e.g. This felt like an emotional slap in the face, it felt like people thought I was pretending/attention seeking/etc. I had people close to me say this when I was struggling with symptom management, I just wanted to be believed and supported. Often having to fight to get medical professionals to listen and believe us. I wish I was exaggerating, but endo properly sucks! Please bear in mind that the average diagnosis for endo takes 7.5 years and a surgery. Endo can cause intense pain, pain every day. I’m trying my absolute best to function, but I am sick (sucks but true).Īlternative: Express sympathy/concern for them without the comparison.Įrrmmm…yup it is. Please don’t compare people with endometriosis! There is no correlation between the stages of endo and the symptoms experienced. “My sister/cousin/neighbor’s cat has endo which is much worse, and they seem to be coping much better.” So, adding on extra things is often not an option!Ģ. Also, being sick is hella expensive as it is: prescriptions, loss of pay or work through sickness, etc. I’ve worked hard to accept my endo, and I still have a long way to go. Not throwing a pity party, just plodding on. “You could be better if you just tried harder.” I wish relief on all people with endo.īut what I hear when unsolicited advice is given is… Don’t get me wrong, but I’m so genuinely happy for your sister/cousin/shop lady who also has endo who “cure” it with clean eating/yoga/acupuncture/etc. When said without being asked! If I ask for advice obviously that’s a totally different scenario.
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