To the People Who Think I'm Nothing Like Those 'Lazy' Endometriosis Patients
I’m laying on the couch watching “The 100” on Netflix. I need to tweet how actor Ricky Whittle hands-down beats Brad Pitt in “Fury” to some movie critics. I am so lucky! How do I do it all? Modeling, acting, stand-up comedy, producing shows for endometriosis awareness, meeting with doctors and patients, interviews to promote my projects while still finding time to “Netflix & chill” all by myself. I’m not like all those other “lazy” patients that don’t try to help themselves.
Scrolling through my tweets, I find a lot of the same assumptions about me:
“I wish I could have the best doctors and treatments like you.”
“I wish my daughter/wife/girlfriend/sister/friend had the drive you have to get up and do something about her endometriosis.”
“You don’t make excuses like my daughter/wife/girlfriend/sister — can you talk to her?”
Hold up! You have it all wrong!
Yes, I’m lucky. I do have what I believe are among the best doctors and experts for treating endometriosis in Canada. I fought long and hard for my multidisciplinary team, but finding it at all was a tremendous stroke of luck and no reflection of my connections, determination or strength.
I’m watching Netflix and tweeting film critics because I mentally, emotionally and physically don’t have the strength to do anything else. Yep… I’m just like your “lazy” loved one who should be more like me. I’m Netflixing so hard because it’s one of my coping strategies for self-care that helps keep my mind off the acute black-out pain I’m feeling. Your loved one is different. Right? They “don’t even try.” They “whine all the time” and maybe post cries for attention in social media so people take pity on them. So annoying, right? They don’t even have a self-care strategy or try any of the herbal remedies you spent so much time Googling so they’d get better! How inconsiderate of them. They should stop making excuses and be more like me. Amiriiiight?
You don’t see me force-feeding myself the homemade soup broth my mother brought me and the peppermint tea a comedian surprised me with on his way to his next performance. I’m not put-together unless you count being wrapped in the heated blanket my father got me and the Cookie Monster onesie pajamas my sister gave me for added comfort.
To inflict a person with so much trauma they experience crippling acute pain is considered inhumane, but when endometriosis does this to a patient some consider it to be a natural part of being a woman. Well, not just endometriosis. I believe this is the case for many complex women’s health conditions and chronic invisible illnesses.
Wait. I do have something that’s even better than what your loved one has! It’s my big secret of how I do it all and more. Want to know what that is? I will share with you because I want everyone with chronic incurable illness to have a vial of their own superhuman strength like mine! It isn’t a cure, but I hope it helps.
Are you ready for this? Pen and paper handy?
My big secret is: I have a legion of family, friends, and people that believe me. Nobody would dare call me lazy, accuse me of making excuses, or suggest I need to get over it no matter how well I am. My mom can run faster mad than you can scared and that’s no joke. There’s no messing around when it comes to blaming me for this incurable disease.
Imagine what could happen if more loves ones had enough and decided to speak out?
Imagine what it could be like for the ones helplessly watching us suffer to know they aren’t in this alone with us?
I sometimes wonder if people doubt endo warriors because we look fine on the outside, or if it is just too painful to admit the suffering is real and it hurts too much for them to believe. Maybe they are afraid or ashamed?
I can’t deny I’ve found good doctors.
Most importantly, I have a legion of family and friends that believe me and stand by me. Will raise their voices in their own way to be heard. They don’t judge me or tell me how they think I should be living with this disease! They come to doctor appointments, give me rides home from the hospital, to their houses so they can help me, are patient when it’s hard to be patient, give me extra time, encourage me to rest, and all of the loving compassionate things loved ones do when a devastating disease doesn’t involve pelvic pain.
All of the medications, mindfulness exercises, positive thinking, counseling, and treatments in the world can’t lift me the way my friends and family have.
Real-life connections. That’s what makes the difference!
If you’re reading this because your loved one has endometriosis, I want you to know you’re not alone in this.
I want you to know that it doesn’t matter how much you’ve doubted, denied, fought or guilted! You are human and you don’t know what you don’t know. I can’t blame you if you’ve gone years frustrated and angry!
You do have the power to make a difference just by believing her when she doesn’t do that menial task, is late, distracted or cancels commitments. Maybe she dropped out of school or lost her job, and telling her everything you think she should be doing isn’t going to make her well enough to change that. All the best doctors, treatments and self-determination in the world can only get her so far until she has a support system in place that accepts her without needing to punish her for a disease she never asked for that confuses the world’s leading researchers.
It won’t happen overnight, but over time you can give yourself the chance to see her (or him) for the warrior that’s always been in front of you.
My big deep secret is love.
The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? If you’d like to participate, please send a blog post to firstname.lastname@example.org. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.