Psst! Wanna know a secret? Well, I’m about to tell you five secrets you probably don’t know about women with endometriosis. Of course these don’t apply to everyone, but I think most women with endometriosis can relate to at least one.
From my personal experience, here are a few things my “non-Endo” friends need to know about the disorder.
1. We know you may not believe believe us.
Endometriosis is often referred to as an “invisible illness” for a reason. Like many chronic illnesses, we can look totally fine from the outside and still be suffering immensely. We often smile through the pain because we have levels of strength we don’t even understand. It hurts when doctors, friends, family and employers don’t believe us, or when others assume we’re overreacting about our condition. Because of this, we often rely heavily on our own strength.
2. We might downplay our endometriosis pain.
We may pretend to be OK because we know we might look fine in your eyes. If we tell you we’re in pain, we know you may not believe us. If you do notice that we’re struggling, we will likely answer, “Yeah, I’m totally fine!” — when really that’s not the truth. We often try to be strong and put on a brave face for those around us because we don’t want to feel like a burden.
And no, we don’t have low pain thresholds. For many of us, the pain caused by our endometriosis really is that bad. Sometimes it’s just easier to pretend we’re OK than to bring any form of attention our way.
3. We actually don’t want to cancel plans.
Sometimes we just have to. At times, the fatigue, nausea and pain hits so hard, we literally can’t move. Our bodies just can’t take anymore and we are forced to rest. The Fear of Missing Out (FOMO) is real, but so is this disease. If we don’t learn to stop and take a break, our bodies do it for us.
If we cancel plans with you at the last minute, please be understanding and let us know that you don’t mind rescheduling for another day. We’re already having a hard time, so try not to make it harder on us. The stress of letting others down can be too much to bear, but your understanding can really lift a bit of that weight off of us so we can focus on taking care of ourselves.
4. We fear losing everything.
Endometriosis affects every aspect of our lives, including our jobs, relationships, mental health and quality of life. Some of us use up all of our sick leave, calling into work after exhausting nights spent curled up on the bathroom floor vomiting and shaking with pain. The snarky comments made by our bosses about missing “another day” of work makes us fear losing our jobs. If only they understood the side of this illness only seen in the privacy of our own homes. It’s ugly, heart-wrenching and extremely difficult to cope with.
We often worry that our significant others will leave because it’s all too much. It’s not easy taking care of the “sick girl.” And don’t even get started on the medical bills. Many of us go into tremendous amounts of debt trying to get the treatment we so desperately need. For some people dealing with endometriosis, a lot of this really takes a toll on mental and emotional health, causing depression, anxiety and even suicidal thoughts.
5. Many of us want support, not sympathy.
A huge reason some of us don’t like sharing our struggle with endometriosis is we fear others will think we’re just looking for sympathy or attention. This couldn’t be further from the truth. If we share any part of our journey with you, like a symptom we may be having or just that we’re having a bad day, we only want your support. That can include words of encouragement, a hug or a kind gesture that shows us that you care.
We don’t ask for much. We just want you to acknowledge and understand that we may not feel well, even if we look OK. Your support and empathy really does mean the world to us.
A version of this article was previously published on the author’s blog.