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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 that most woman with Endometriosis can relate to at least one. From my personal experience, here’s a few things my non-Endo friends need to know…
1. We know you don’t believe us.
Endometriosis is referred to as an invisible illness for a reason. Like many chronic illnesses, we can look totally fine from the outside but be suffering immensely. We smile through the pain because we have levels of strength that not even we 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 rely heavily on our own strength.
2. We downplay our Endometriosis pain.
We pretend to be okay because we know we look fine in your eyes. If we tell you we’re in pain we know you probably won’t believe us. If you do notice that we’re struggling, we will most likely answer, “yeah, I’m totally fine!” when really that’s not the truth. We 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, the pain caused by our Endometriosis really is THAT bad. Sometimes it’s just easier to pretend we’re okay 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 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 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 don’t 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 from our jobs, our relationships, our mental health, and our quality of life. We use up all 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 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. All of this really takes a toll on mental and emotional health causing depression, anxiety, and suicidal thoughts.
5. We want support, not sympathy.
A huge reason we don’t like sharing our struggle with Endometriosis is that we fear that 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, 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, just acknowledge and understand that we may not feel well even if we look okay. Your support and empathy really does mean the world to us.