Endo warrior is a term for people diagnosed with endometriosis (endo for short), which is a chronic disorder. The symptoms of endo include chronic pain, painful, heavy, or irregular periods, pain during or after sex, infertility, painful bowel movements and fatigue.
It’s an all-round fun time.
I have endo. I totally sucks, but I carry on. Being chronically ill is so challenging and there’s no manual. When I was newly diagnosed people would ask me, “What do you need?” I’d have no bloody clue, and saying a “new body” does not get the same laugh outside the spoonie community. I cope with my endo through sarcasm and dark humor, that’s my thing but I’ve noticed it makes a lot of non-spoonies uncomfortable. I thought I should probably work on not doing it, then I started thinking, “Why am I doing it?”
I’m doing it because I’m uncomfortable and I don’t like what they’ve said. So, here’s a list of what to avoid and alternatives for how to talk to people in your life with endo.
1. “Have you tried…?”
When said without being asked! If I ask for advice obviously that’s a totally different scenario. 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. I wish relief on all people with endo.
But what I hear when unsolicited advice is given is…
“You’re just not trying hard enough.”
“You could be better if you just tried harder.”
Not throwing a pity party, just plodding on. I’ve worked hard to accept my endo, and I still have a long way to go. Also, being sick is hella expensive as it is: prescriptions, loss of pay or work through sickness, etc. So, adding on extra things is often not an option!
Alternative: Wait for me to ask.
2. “My sister/cousin/neighbor’s cat has endo which is much worse, and they seem to be coping much better.”
Please don’t compare people with endometriosis! There is no correlation between the stages of endo and the symptoms experienced. I’m trying my absolute best to function, but I am sick (sucks but true).
Alternative: Express sympathy/concern for them without the comparison.
3. “It can’t be that bad, surely?”
Errmmm…yup it is. Endo can cause intense pain, pain every day. 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. Often having to fight to get medical professionals to listen and believe us.
I had people close to me say this when I was struggling with symptom management, I just wanted to be believed and supported. This felt like an emotional slap in the face, it felt like people thought I was pretending/attention seeking/etc. I was in a lot of pain on a lot of painkillers.
Alternatives: Comment on how bad it is, acknowledging that you hear us e.g. “That’s a really rough time, you’re dealing with a lot, I’m sorry.”
4. “You look well/unwell today.”
I’ve heard both far too many times, please stop telling me when I look bad, I already know. 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!
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. I want to be well but I’m not even on those days when ‘I look well’ I’m still in pain. An alternative to this is just compliment me like I wasn’t chronically ill.
Alternatives: “It looks like you are having a bad/tricky day, is there anything I can do to help?”
Would you add anything to this list? Tell us in the comments.