In 15 minutes flat I can go from feeling fine to being in such intense pain that it brings me to tears. This is a regular part of my life with endometriosis. For so long I felt isolated in dealing with this type of pain and with my overall endo struggle. Thankfully, in today’s digital age, many endo warriors are able to connect like never before.

I’ve found a lot of solidarity in using various online platforms to talk to other people who have endometriosis. It helps us realize we really aren’t alone, no matter how much it can feel that way. Although our battles can be so similar, we also learn from each other because each person ultimately has a unique experience with this illness. Also, we get to commiserate about how much endometriosis sucks.

If you’re in need of some of that comfort and insight, you came to the right place. Whether you’ve known you have endometriosis for years or you’re just starting to suspect it’s the culprit behind your pain, here are some facts of life with endometriosis.

1. The pain can truly be incapacitating.

People without endometriosis may know that pain is a classic endo symptom that happens when the tissue lining the uterus (or something similar to it) grows where it shouldn’t. But they can never really know just how debilitating the pain can be.

“It’s not just pain in my abdomen or pain in my pelvis,” Lara Parker, 28, an endometriosis awareness advocate who describes her illness as “a monster,” tells SELF. Parker speaks candidly about her diagnosis on her social media accounts. “It completely wreaks havoc on my entire body in every possible way,” she says.

Dealing with this level of pain on a regular basis basically gives people with endometriosis nerves of steel. “We have the best superpower ever because [we’ve] learned how to navigate through life and still try to function,” April Christina, 34, an online endometriosis awareness advocate who organizes a brunch in New York City to help connect those with endometriosis in need of support, tells SELF.

But that can also make us used to the pain, when in reality it should never become just another regular part of our lives. In the past, Maggie Bowyer, 21, felt like they needed to push through the pain no matter what, even when it was hitting a 9 out of 10 on the pain scale and they should have rested. “I thought it was normal for my body to feel that way,” says Bowyer. “[But] I can take breaks. I wish I knew that long ago.”

Leah Jones, 24, had a similar experience. “You can’t physically see something wrong, but there is,” Jones tells SELF. “People swallow their pain and push forward.”

That’s the bottom line about the pain, really: Even though pain is common with endometriosis, it’s not normal, Roo N., 27, who helps others with endometriosis find their footing through her online platforms, tells SELF. It’s so, so valid to seek help for your symptoms, Roo adds.

2. Symptoms don’t only happen when you have your period.

I deal with endometriosis symptoms even when I’m not on my period, as do many of us. Yes, debilitating pain while you have your period is a major symptom of this condition. (Endometriosis lesions are thought to bleed at that time, which can cause or exacerbate pain.) While at a former job, Allishia Rahn, 24, routinely had to work from home for the first few days of her period because the pain was so bad. Over time, colleagues reacted negatively to her working from home, she says, and she wound up leaving the company.