It's Endometriosis Awareness Month, and while there's plenty of talk about the physical symptoms—the debilitating pain, heavy periods, and fertility challenges—there's often less discussion about what this condition does to you emotionally. And let's be honest, that part can be just as brutal. Living with endometriosis isn't just about managing pain; it's about navigating a complex emotional landscape that can leave you questioning your worth, your sanity, and your place in the world.
(And before we go any further, let's clear something up: endometriosis isn't just a 'period disease' as it's often mischaracterised. Endometrial tissue has been found far beyond the reproductive system—in the lungs, bowel, stomach and even the heart. This misunderstanding is part of why so many struggle to get proper diagnosis and treatment.)
The Diagnosis Marathon
Let's start with the journey to even getting diagnosed—which takes an average of 7-10 years. That's not a typo. Years of being told it's "just bad periods" or that you're "overreacting." Years of wondering if maybe you really are just weak or dramatic when the pain forces you to cancel plans or take sick days.
"Have you tried taking a paracetamol?"
"Maybe you should exercise more."
"Everyone gets period pain."
Sound familiar? This medical gaslighting doesn't just delay treatment; it chips away at your self-trust. By the time many people finally get that diagnosis, they've spent years questioning their own reality. That's not just frustrating—it's traumatic.
The Inner Critic Gets a Megaphone
When you live with a condition like endometriosis, your inner critic tends to work overtime:
"I'm lazy because I need to rest."
"I'm a burden to my partner/friends/family."
"I'm unreliable because I have to cancel plans."
"I'm making excuses when I can't do something because of pain."
These thoughts aren't just annoying mental background noise—they become the soundtrack to your life in an ableist society that measures worth by productivity and reliability. The expectations to "push through," "stay positive," and "not let it define you" can feel suffocating when some days getting out of bed is your biggest achievement.
The Identity Crisis
Remember who you were before endo took over? The you who could make spontaneous plans, who didn't plan life around pain levels, who didn't have to calculate energy expenditure like it was a finite resource?
Grieving your pre-illness self is real. It's valid. And not spoken about enough.
Your relationship with your body changes too. Instead of your body being a vehicle that carries you through life, it can start to feel like it's betrayed you. Learning to trust your body again—or at least forge a new relationship with it—is complex emotional work that doesn't happen overnight.
The Social Impact
"Sorry, I can't make it tonight. I'm not feeling well."
"Again? But you were sick last time too..."
The social toll of endometriosis is enormous and isolating. Friends may not understand why you cancel last minute. Family members might suggest "miracle cures" or imply you're not trying hard enough to get better. Partners may struggle with the impact on your sex life or family planning.
Even the most well-meaning people in your life might not get it. How could they, when your pain is invisible, and your energy limitations aren't obvious? The result is often a shrinking social circle and the emotional labour of constantly explaining your condition or—perhaps worse—hiding it to avoid the explanations altogether.
The Fertility Question
For many with endometriosis, questions about fertility become heavy emotional baggage. Whether or not you want children, having that choice potentially compromised is its own form of grief.
And then there's the impact on relationships. Discussing potential fertility issues with partners can bring these concerns to the forefront earlier than you might have wanted. It can change how you see yourself, too—am I still "woman enough" if I can't have children? (Spoiler alert: absolutely yes, but society's messaging makes this a common and valid concern).
Finding Your Way Through
So, what helps when you're navigating all this emotional turbulence?
First, validation. Your experience is real. Your feelings about it are valid. Your struggles aren't "just in your head" and you're not "making too big a deal" out of your condition.
Finding community matters too. Whether it's online support groups, in-person meetups, or working with professionals who understand chronic illness, connecting with people who "get it" without explanation can be incredibly healing.
Setting boundaries becomes essential—even when it's uncomfortable. Learning to say "no" without over-explaining, prioritising rest without guilt, and communicating your needs clearly are all skills that protect your limited energy.
Self-compassion is perhaps the most powerful tool in your emotional toolkit. Treating yourself with the same kindness you'd offer a friend with endometriosis can transform your relationship with yourself and your condition. You wouldn't call your friend lazy for needing to rest, so why speak to yourself that way?
The Radical Act of Acceptance
Acceptance doesn't mean giving up or saying, "this is fine." It means acknowledging your reality so you can work with it rather than constantly fighting against it.
It means being able to say, "This is shit, AND I can still find joy."
It means recognising that your worth isn't tied to what you can produce or how much you can push through pain.
It means understanding that you don't need to earn rest or justify your limitations.
What Now?
If you're reading this and living with endometriosis, know that taking care of your emotional health is just as important as managing your physical symptoms.
If you're struggling with the emotional weight of this condition, consider:
Working with a therapist who understands chronic illness (yes, I'm biased, but therapy really can help!)
Joining support groups like those offered by Endometriosis UK or finding online communities
Practising self-compassion exercises daily
Setting boundaries that protect your energy and emotional wellbeing
Educating those close to you about the full impact of endometriosis
Endometriosis may take up space in your life, but it doesn't define your worth or your future.
Your feelings about it—the grief, the rage, the fear, the hope—they're all valid parts of your journey.
This Endometriosis Awareness Month let's make space for the full experience of this condition—not just the physical symptoms but the emotional realities too. Because awareness isn't complete until it acknowledges both.
And as always, if you’re looking for some extra support, please do reach out. I have some space for new clients towards the end of March and I’d love to be able to support you.
Kirsty x
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