So here we are. We know what sister and sisterhood mean. We know what sisters do, and do not do, for each other. Sisters give and they don’t take. They look out for one another. They don’t take the easy road. Which brings me to Part 3 of this blog installment, which may, after some reflection, piss some of you off, but that’s okay. A sister will give her honest feelings if she thinks it is for the benefit of the family as a whole.
Over the past several months, one topic has been increasingly coming to my attention: money; generated revenue, to be more precise; income.
I’m not talking about the money you receive from your 9 to 5 employer or your disability checks. I’m talking about organizations, women, and others selling their knowledge, their insight, their experiences, their successes, their programs, their opinions, and their time. To you: a fellow EndoSister. If you wish to learn their secrets, seek to get better, diminish or vanquish your Endo symptoms, live a happier and fuller life…you seemingly must fork over your money. I’m tired of hearing about marketing, analytics, widgets, advertising, networking, and target audiences when someone speaks of their sisters. A sister is not a target audience. A sister is not a demographic for profit. A Sister is someone, with whom, you are in this together with.
I’m talking about organizations and individuals raising funds, advertising that their collected monies go to find a cure, but in fact the revenue generated from events may go toward venue fees, permit fees, t-shirt fees, and sometimes directly into the pockets of the organizers. Those raised funds, even if given to an organization after an event, may simply pay payroll, purchase office supplies, etc. Very little may actually go toward awareness campaigns, research, and studies. If you are participating in an event that claims to be raising funds, demand a transparent accounting of where those funds are distributed, before and after the event. Demand a written statement of the exact percentage of the proceeds that will go toward either awareness or research for a cure. Validate their definition of charity. Also validate if the proceeds are for “Awareness” or if the proceeds are for scientific study of the disease. They are not one and the same, though some have been very loose with insinuating that their campaign of awareness will provide research for a cure…You have a right to direct your contributions and voluntary efforts to where you want them to go, without misdirection.
Another point on what a sister does and does not do: Sisters do not bully, or use emotional blackmail, or prey upon your fear and emotions, or insinuate that you are a bad sister if you do not contribute to or join their their specific campaign or program. If they do, one needs examine closely their motivations. Is it to be a supportive sister? Or is it perhaps something else? Just because someone happens to share a single trait with you, such as Endo, does not mean their services or activities or programs are for the primary intent of your well being. If you are encountering stress from your interactions with another sister, which Endo gives you enough of as it is, then you likely need to politely back away. Endo takes so much away from you, but please, trust your instincts…Endo cannot take that from you.
So many of us cannot afford to purchase these “offered services” or registration fees. Our money goes toward utility bills, groceries, families, clothing, medical bills, supplements, and prescriptions. So many of us struggle to make ends meet. And continue to struggle with our pain and Endo symptoms. Continue to struggle while others “hold the secrets” to success. There are those who dangle these “secrets” before us, like the proverbial carrot on a stick. They entice us with discounts, coupons, and invitations. All the while, they know full well that what worked for them may not work for you. But they’ll take your money anyway. And their programs may actually work for you…or I…but we may never be able to afford them to find out. Rather than teach you how to fish, there are those who would rather sell you the fish.
Why can’t people…no…why can’t EndoSisters simply share what they’ve learned? Give it freely. Isn’t that what family does? What sisters do? If you have Endometriosis and know what this suffering feels like, yet you hold your “fixes” for ransom or purely seek to profit from this, I fear you have a far darker illness deep within you. If you tout yourself as an enlightened being, a teacher, a scholar, a writer, a doctor, a therapist, a counselor, or a role model, yet you opt to either grant or deny knowledge which may prevent suffering in your sisters in order to make a profit, I beg you to remember the fear, confusion, helplessness and anguish that you know you have suffered as a possessor of this disease, and act accordingly.
I pledge to my readers, fellow EndoSisters, and anyone else: I will never seek to profit from this. I will freely share anything I’ve learned with you. The money raised in a Bloomin’ Uterus fundraiser will never enter my personal pocket: I will donate it to a charity of my choosing whom I have fully researched and trust to do the most with our money. Any support groups, meet-ups, or walks I organize will never charge admission or registration. Nor will they be a platform for those who seek to self promote their interests and products for profit, popularity, political or personal gain. You are not a consumer to me. You are my sister.
I was raised with the understanding that if I can help someone, I help someone. I don’t charge them for my assistance. I’m not in it for the money. Or the glory. I simply help. Because I can. Because I want to be a good sister, and I want others to be good sisters as well.
I challenge you to reflect, and do the same.