Endometriosis Support: What Not to Say and What You Can Do Instead
Endometriosis affects approximately 10% of women worldwide, so why on earth have so many people not heard about it before? It’s unbelievable that there are more studies on male pattern baldness than endometriosis. There are so many myths surrounding endometriosis, which can leave women feeling alone and misunderstood. It’s time to put an end to these misconceptions once and for all! If you want to make a difference, a great place to start is to understand the disease better and learn what not to say. Let’s have a look!
“You Will Never Get Pregnant.”
Endometriosis can sometimes make it difficult to get pregnant. The keyword in that sentence is ‘sometimes’. Unfortunately, this truth has spread like a telephone game, and some people think that you can’t get pregnant at all if you have the disease. Research shows that around 60-70% of women with endometriosis can get pregnant spontaneously. There are also many pathways to parenthood, like IVF, which can help achieve pregnancy as well.
If someone with endometriosis is told they’ll never get pregnant by a friend or a family member, it can create uncertainty and anxiety around something that might not even be the case. They may have even been trying to get pregnant for a while, and saying this can plant further doubt in their mind.
What To Do Instead
It’s best to completely avoid any conversation about fertility with someone who has endometriosis. It could potentially be triggering, and it’s best to stay positive rather than creating upset. Let them initiate that conversation if they want to.
“Everyone Gets Painful Periods.”
Of course, period pains can be awful - all of us girls know that! But endometriosis is so much more than this. When tissue grows outside the uterus, it still thickens and begins bleeding. This blood can’t leave the body, which can cause inflammation and severe pain. Although everyone’s symptoms are different, some women experience back pain, heavy bleeding, difficulty getting pregnant, painful intercourse, bowel pain, and fatigue. By comparing endometriosis to painful periods, you’re invalidating their experience, which can make them feel alone.
What To Do Instead
Endometriosis can affect everyday life, and it’s important to bear this in mind. For example, if a friend cancels plans due to their endometriosis, let them know that’s okay and you’re happy to reschedule. Tell them you’ll listen to their experiences, and that they can rant to you if they need to. Saying something like “Wow, that sounds awful” can validate their feelings and show they have people around them who care and are willing to understand their struggles.
“Paracetamol Will Stop Your Pain”
Taking pain medication like ibuprofen and paracetamol can make symptoms more manageable, but it won’t necessarily stop pain altogether. A person with the disease will know what is useful for them and what isn’t. They don’t need to be told by someone who doesn’t have the disease what they should do.
What To Do Instead
The best thing you can do is ask them if they need help and what would be useful. If you make assumptions and act like an expert, it can be a headache to listen to! They might have something specific on their mind that you wouldn’t have thought of. Here are some things they might suggest and appreciate:
- Offer help with chores around the house, like keeping their dishes sparkly clean and cooking their favourite meal
- Help them put together a plan for how and when to practice self-care
- Provide emotional support by listening carefully to what they have to say
- Check in on them throughout the day with friendly texts and calls
- They might want you to attend doctors' appointments with them for support
- Offer to nip to the shop to buy them painkillers or warm up their hot water bottle
Final Thoughts
Busting the myths about endometriosis is more than setting the record straight; it's about empowering women who are living with the disease. Every conversation, story shared, and myth that is debunked brings us one step closer to a future where women with endometriosis can be supported in the best way by the people in their lives.
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By Holly Dodd
Freelance Writer + Blogger
