Three Tips to Finding Balance as an Endo Advocate

If you are on any form of social media and you follow a few endometriosis awareness accounts, I’m sure at some point, you’ve seen a meme or a post talking about "being more than endometriosis". The captions might read something like "I am not my disease" or "I am not defined by endometriosis" or "I am more than my pain".

I agree with them all, but I’ve built a life on the opposite notion anyway. There is not a minute that goes by where I forget I have endometriosis. I have made it my life’s work, and I chose to do so, but it comes with a price.

I love what I do, but I do wonder at times, would I be different, healthier, better even – if endometriosis wasn’t such an integral part of my existence? As more endo warriors take to the Internet to share their stories and to advocate for our community, I felt it was worth sharing some reflections on what I’ve learned from my years of doing this work.

Take time out

Please, give yourself a day off. I am a recovering workaholic and I find it very hard to not work on This EndoLife. This means it’s rare for me to have a day when I’m not talking or writing or thinking about endometriosis. I don’t personally suggest this route. It’s been mentally exhausting and if I’m honest, it just feeds the martyr in me, and I really don’t want to feed her.

I believe it’s good to take time off, not just for your mental and physical health, but for inspiration too. I always find I have my best ideas and thoughts when I do take a break, and I return with renewed energy and enthusiasm, rather than reluctantly dragging my feet throughout the entire process.

Know your boundaries

Boundaries are important in all aspects of life, in my opinion. The great Brené Brown said something along the lines of resentment being a sign that your boundaries have been crossed, and I totally agree. Whenever I feel resentment, all I have to do is look a little closer and I realize my boundary lines have been completely rubbed out.

There are some instinctive boundaries that I’d love to keep to with my advocacy and endo work, which I cross regularly, but I endeavor to keep to (one day). You might want to consider boundaries around the times you answer DMs on Instagram, so you’re not replying day and night; a cut off for emails and having Sunday as day for just family and friends, and no work.

Find the light

Life can become very heavy when you’re talking about a chronic disease on a daily basis. I remember being at social events when I realized I’d forgotten how to talk about anything else. My conversations and even just my thought processes felt dark and gloomy.

I found lightness in fantasy, spirituality, and creativity. My love of Harry Potter has blossomed in the past five years, and it most certainly feels like Hogwarts is my escape from the world of endometriosis. I return to the books and films again and again, whenever I feel like I need comfort.

Find something that you feel just as passionately about as you do about endometriosis. Something that brings you comfort, joy, or lightness. Even if it’s just watching YouTube videos on how to bake well, give yourself that time to indulge in that hobby. Feed your spirit.

Yes, advocacy is important work and is needed in this world, but you, we, all of us also need joy.