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Army of One : Adventures of a Squeaky Wheel 

7/29/2014

5 Comments

 
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I've railed on in this blog against the unfairness of the fact that my life is still very much effected by both the financial and medical ramifications of the most heartbreaking experience of my life. On a daily basis credit card statements, hospital bills, follow up appointments, and insurance documents pull me back into the murky mire of a pain that I keep mistakenly thinking I've outrun (I never have been much of a runner). This post is less about the features of that particular beast though and more about the response I have had to have to the inevitability of its presence in my life. I have had to build an armor of information and health-care system knowledge even though it very much goes against my natural inclinations (I'm a lover, not a fighter, you know?). I have had to obtain this armor however, because it is very apparent that those who do not have said protective gear are pulled under and trampled over in this battlefield of reproductive disfunction and medical need. 

I am not a numbers person. I never have been. I got by in math class until I graduated high school and then let my math brain go into early retirement. When the bill comes at dinner I hand it to someone else to divvy up. I throw my pay stubs in an envelope and with little to no thought (until its time to panic at tax time). I forget to look at price tags and then have zero ability to quickly add up in my mind how much things are worth to determine if I'm being overcharged. So, when it comes to navigating deductibles and insurance coverage that same numbing of my synapsis always seems to occur. I can hear the insurance representative speaking in what seems to be a reasonable tone seemingly laying out a logical progression of thoughts, but her words are not translating into my language. It can feel belittling and I often feel the need to interrupt the representative and suggest that perhaps she ought to speak to a grown up about this rather than myself (then I remember I am one of those). So the first part of the armor has been wrapping my brain around deductibles, co-insurance, EOBs, COBRA, and all manner of other acronyms I never had reason to know before. I've had to demystify this process for myself and take ownership over it. I've had to remind myself that no one expects me to be an expert on everything (except myself apparently). It has been my new strategy to remind myself that informed deferment to the people that actually are experts on this stuff is okay.

The next part of the armor has everything to do with self-advocacy as it pertains to my medical plan. It's strange that this should be difficult for me as a big part of my job at the hospital was being a patient advocate and encouraging patients to advocate for themselves. However, when it comes to my own life it feels quite a bit more complicated. I get paranoid. I do not like to be a bother. I don't like the idea of being the patient about whom the medical secretary secretly rolls her eyes. However, I am finding that if I don't keep track of the intricacies of my own medical needs and follow up on them with the doctors myself, they will often go unaddressed. Sometimes this takes multiple calls, call backs, emails, and, hey, sometimes it takes tracking down a physicians vacation home and staking out in the backyard overnight (kidding. don't be frightened). 

I think self-advocacy is key in many medical specialties, but there is an added layer that I am beginning to uncover when it comes to reproductive endocrinology.  The more I am in this world and speak to other women who are as well, the more my theory is backed up. No physician or nurse or secretary would ever admit this, but there is a certain underlying attitude toward women who require reproductive support. I'm not suggesting this energy is created maliciously. It's indirect and never acted on, but it exists. It's palpable. It's a certain gentle implication of desperation, a nod toward the archetype of the neurotic woman with biological clock ticking , a hint of blaming deep-seated and justified emotions on simply being "hormonal". A certain degree of this exists, but you know what else exists and trumps all that? The questions that I need to get answered. If it takes persistence and fortitude to get those answers -- I've decided I am ready to go to battle.  

So what I am turning over in my mind today is how to be this empowered warrior in a strange land unapologetically. I am finding that the more of my genuine self I bring to the process, the more I am treated with humanity. I have had to rise above the paranoia about being "that patient" and reframe it for myself that I am the hero of my own healthcare plan. I've had to remind myself that when I was on the other side of this, I never thought patients with a lot of questions were a bother, I thought they were engaged. I felt for them. I wanted to help all the more. This is battle none of us signed up for, but we were drafted into it and now our best strategy is bravery, heart, knowledge, and hope.
5 Comments
Andrea Leong
8/1/2014 12:10:45 am

What wonderful insight you have, Becca. Isn't it strange how much easier it is to advocate for someone else than for ourselves? Thou art brave & beautiful. Ever forward my dear.

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Becca, The Ever Forward Blog link
8/5/2014 12:54:31 am

Thank you so much Andrea!

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Lauren G
8/2/2014 06:09:39 pm

Thanks, as ever, Becca for your insightful words! It's interesting to hear of your experience State-side vs here in the UK. I feel fortunate in a sense not to face the added heartache and challenge of dealing with the financial consequences thanks the our national health system, but the blessing of a state system is not without caveats. Budgets don't allow for any investigative or exploratory tests until you have experience the pain of miscarriage three consecutive times, pretty much without exception. Standing as I do now with two under my belt, the second of which involved emergency surgery and gave them ample opportunity to take a look round or test what they took away - it's difficult to get your head around the idea that you need to approach a third attempt blind so to speak, when maybe there is something that could be done. The notion that this policy is because it is simply so very common doesn't feel especially helpful - what other medical situation would they allow to happen three times before initiating a single test? Anyway - just thought it might be interesting to draw some parallels from across the pond here! Wishing you well x

Reply
Becca, The Ever Forward Blog link
8/5/2014 01:02:39 am

Lauren! So nice to hear from you again. Your insights here blew me away! I had no idea the restrictions on investigative tests in the UK -- I guess I always just imagine universal healthcare to be some sort of a magical Utopia. I so appreciate you sharing your experience--it is so interesting to see the ways we are having such parallel yet different experiences on our respective sides of the pond. I am so sorry you have had to go through this terrible pain twice. What an ordeal you've been though.

As always, it is so wonderful to connect with you. Wishing you all the best!

Reply
Paula B link
11/14/2023 01:44:06 am

Thank you for sharing.

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    lover of life. celebrator of everything. drama therapist. wife. friend. picking up the pieces. finding creative ways to put them back together.

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