Babe Didrikson, demonstrates her hurdling technique. 1932.
In July, after my intake appointment at Callen-Lorde (NYC’s LGBT health clinic), my nurse practitioner told me that my cholesterol was high. I needed to lower it before I considered starting testosterone. I bought a bottle of fish oil.
I carried a card in my wallet, with the name of a prominent cardiologist on it, for three months. When I called, the office manager told me that I can’t schedule an appointment until the cardiologist looks at my file. She gave me her name and the fax number, which I wrote down on the back of an envelope.
The next day, I pulled up the Callen-Lorde patient portal expecting to send my results over. I attempted to log in. I tried every permutation of my user IDs and passwords. I phoned Callen-Lorde, and they realized that when they initially registered me they incorrectly entered my e-mail address in my profile (which explained why I never got any emails from them). I dropped by their office to straighten it out and re-register.
I went home, set up the user name and password, wrote the password down on the patient portal information sheet, opened up my file to get my results, and couldn’t find them. I clicked around a lot and gave up. I was going to call Callen-Lorde back and ask where to find my test results, but it was late in the day and the medical records office was closed. I had to wait until the morning.
I thought about calling Callen-Lorde every day, but there was always an excuse to put it off. I waited for a month.
I dread making phone calls. I’m also not very good at filling out paper forms and sending them in. I’m better on email. I’ve been this way since I was a teenager. I’d rather scale a barbed wire fence than make a phone call.
First, I needed to find the cardiologist’s card (which was no longer in my wallet) and the envelope on which I had written the information. I found them buried under a month’s worth of half-opened mail. Then I unsuccessfully tried to re-open the Callen-Lorde patient portal. I went back through the piles and found the piece of paper upon which I had scrawled my user name and password. I opened up the portal, and picked up my phone.
It is all my mother’s fault. Negative and narcissistic, she expected people to be unhelpful or obstructionist. She thought everyone else got better treatment than she did. She felt slighted by every interaction. She believed that things went smoothly for other people, richer people, people with connections, big shots.
In college, when I got shut out of a class I wanted to take, I accepted it as fate and registered for a different, undersubscribed, class. There were other kids who argued with the registrar, or pleaded with the professor directly for permission to take the class, or begged their academic advisor to call on their behalf. They didn’t give up. They felt entitled to get into the class, and they probably did get in.
According to Malcolm Gladwell, in Outliers, those kids were likely raised by a parent who upheld their self-worth, taught them how to negotiate with people in authority, and encouraged them to advocate on their own behalf. These are useful skills if you are transitioning and dealing with gatekeepers, insurance companies, and medical practitioners. I’m not good with the follow through. I get discouraged.
I called Callen-Lorde. They confirmed that the results are not in my patient portal. I needed to fill out a Health Information Release Form, and request them to send my results to the cardiologist. The form was on the patient portal; all I needed to do was find it, download it, fill it out, sign it, and fax it back to them. It might take them a week to send out the results. It sounded reasonable.
I printed the form and filled it out (twice, I screwed it up the first time). I got hung up on the fax it back part. I didn’t ask why I couldn’t email it to them, or if there was an easier or faster way to deal with it. I don’t have a land line or a home fax. When I’ve had to fax something I’ve used the fax at my office, but I only go in once a week. I didn’t want to find a copy shop and pay to fax.
I googled “fax via internet for free”, read a couple of how-to articles, picked out a free service, and subscribed. I scanned my document, renamed it, filled out the fax form on MyFax, attached the document, and sent it. I called to confirm that they got it. It was exhausting.
I still have two phone calls left to place, one to Callen-Lorde to check if they sent it, and one to the cardiologist’s office manager to make sure she got it. And then, maybe, I’ll get the appointment.
Notes: Outliers is the third book of Malcolm Gladwell’s that I’ve read (I highly recommend both The Tipping Point and Blink). While it is does not directly address any LGBT issues, it made me think about why some of us have a lot of trouble dealing with bureaucracy, while others seem to sail right along. Still, I am in awe of those who are well-organized, keep track of where their paperwork is, and don’t procrastinate.
A Boy and Her Dog 
Running a business has forced me to be better about paperwork but I still procrastinate on it and seem to do it in large chunks instead of at the moment I should do it. When Candace and I first got together one of the first things she did was go through my stacks of old mail and make me pay my bills. I hate making phone calls too, even ones that are easy. Good luck with the docs.
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Some things I am super-responsible about, but paperwork is not one of them. My job had very little routine paperwork – lots of computer stuff and puzzle solving and almost no phone calls. Donna is extremely efficient and handles all of her financial/medical paperwork – every once in a while she will ask for help printing something out or finding it on her computer. She is also really good at asking for (and getting) assistance.
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This echoes the mess I’m in trying to transfer universities. So many redundant forms. So much random bureaucracy. And I’m still trying to work up the motivation/courage to do all the running around, phone calling, and pleading I need to get the last few forms filled out. Good to know I’m not alone in dealing with paperwork this way.
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Good luck with your transfer! I have the most trouble with things where there are no clear instructions (or a clear order of things that need to be done), where there is no fixed deadline, and when I don’t have a pressing reason to do it now. I have a hard time convincing myself to take action.
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This is why I’m working with Mount Sinai-Beth Israel. They have been VERY good, honest, and upfront with me. I do the paperwork, I have conversations, I ask for clarification. I hate paying for a fax machine (my usual access to fax isn’t there anymore, because my mom isn’t working as much anymore and she only goes in every week or two at most, and I would use her business fax machine to send in information), but I have Fed-Ex near where I work and I’ll pay if I have to. I hate making phone calls, I’d rather be face-to-face note-taking or email so I can record everything, because my auditory skills suck, but I will if I have to–but I will leave voicemails daily till you call me back if I deem the phone call utmost important. I don’t argue with people like my mother did, and because I always keep copies of my paperwork with me in my backpack, if they need quick access, karma will bless me later on because I always help the nurses and receptionists.
I really don’t like having to fill out redundant paperwork. All the specialists I see are part of the Mount Sinai-Beth Israel system, don’t they have access to my medical and contact info already? 😂
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I don’t know why all these medical offices insist on faxes (it is not 1997 anymore!) and will not let you send it to them in a pdf. If you have a scanner at home you can fax via internet for free using Myfax.
Eventually I will have to get better about keeping track of my medical records, insurance reimbursements, etc. I was very lucky to have good health and good insurance, and I never filled out a lot of forms. I still have good health, but I can see that down the road I better learn how to do all of this properly.
Good to know that you are happy with Mt. Sinai-Beth Israel (I was born at Beth Israel on 16th St.)
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Blink is in my to-be-read pile. I’ve heard excellent things about Malcolm Gladwell.
Self-advocacy can be exhausting. Especially when it comes to anything medical. Good for you for following through. Only two more calls to go! After all you’ve done so far, that’s fantastic. 🙂
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Blink is definitely an interesting read; I’m going to read David and Goliath next.
I’m hoping that I get an appointment so that I can get a better handle on whether I just have high cholesterol numbers or if I have a genuine problem. I already put the reminders on my phone/calendar to call on Monday to see if everything was sent (so I will have a lot of little bells and beeps to turn off).
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I’m amazed that you still use faxes. I think fax-machines died out here at least 15 years ago…
When it comes to self-advocacy I try to think that I’m doing it for someone else, it makes it so much easier to be more pushy.
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For some reason medical practices use fax machines! It is as if they still used dial-up internet and listen to music on 8-track cartridges. I don’t get it either.
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I always wonder to what extent these systems are set up to actively discourage use, and weed out the less persistent. Government benefits and services, in particular, seem designed that way: they will often reject all initial applications, and only deal with those who launch appeals.
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I agree with you completely. My insurance company is notorious for rejecting claims because of not having received pre-authorizations, and for nit-picking forms (both the doctor’s part and the patients part). If I resubmit they’ve usually paid – although they refused to pay for top surgery (but I did not go all the way through the appeals process).
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I am exactly the same about phone calls and I’m only barely starting to improve at paperwork. For me, there was a huge chunk of it that was about self-loathing that had been internalized because of the way I feel about gender. Acknowledging that has helped some but phone calls, ugh.
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I always look for an alternative to making a call – I confess that if I am really anxious I will practice out loud (in private) with my end of the call. At least that way I’m confident that I will get out a coherent sentence, and not just an aah aah ahh my name is Jamie and…
Paperwork is a different, but related beast. Sometimes I wish I had a “grown-up” that I could just ask to do all the hard stuff for me, without making me feel ashamed that I have trouble with it.
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I dread going into my home office due to the disarray. I did last year start using the note pad app on my iPhone to write down details I need to remember. Passwords etc. I write it on paper and can’t find it in a day. And I definitely was a kid raised like u – accept and move on without a fight. I fightback more now but awkwardly and uncomfortably.
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I use a secured app on my iphone for my passwords and IDs, but the first time I didn’t write the Callen Lorde information down on it (this time I did). I lost a lot of time sifting through – I know there are all these rules like a piece of paper should never pass through your hands more than twice, but I never deal with paper right away. Financial incentives help (I pay my bills on time and in full because I hate late payments and interest) so I may need to pay/bribe myself to do particularly odious paperwork tasks.
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I’m terrible with follow-through. I’d probably be in the same situation you are; I get frustrated and assume I’d be a nuissance for asking for what I want. I hope the cardiologist works out for ya, glad you’re being proactive about your health this year!
Loved “Outliers” by the way.
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One of the things I liked about Outliers was the explanation of birth dates. I was a December 24 baby for a school system that used Jan 1 as the cutoff – I was always the youngest/shortest in my grade (and always picked last for sports). Fortunately, I was also usually the best at math (more useful in real life than kickball but not great for your social life under the age of 18).
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I do remember that, as it related to hockey players specifically (in the book). That book was so eye-opening to the different forces that shape our lives. It sounds like your relative age had an effect on your identity at least: once you’re “the kid who is good at math” it’s a self-reinforcing identity.
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Paperwork sucks, no doubt about it. Good on you for persevering. 🙂
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Thanks. The whole medical system sucks and requires way too much paperwork (fax? in 2016?).
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I feel you. The hoops we have to jump through exhaust me and each step takes me so long to work up to.
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I can only imagine what it will be like to try to convince the powers that be to allow and pay for a minor’s transition (plus dealing with your own health issues at the same time). At least for me I don’t feel that time is running out, but with kids it is critical to dismantle the road blocks.
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Fortunately and unfortunately, I tend to have more gumption for others than I do for myself. I’ll make sure my children are taken care of – doing the same for myself feels like a much larger task.
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Same here, and so is my partner, so we can’t swap undesired duties as we usually do. I am usually on top of things and super organized, but I’d rather pay a huge fine that make the phone call I should have made months ago. Thank goodness for email.
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I look forward to the day when you can make a medical appointment as easily as you can make a dinner reservation on OpenTable. Donna has no trouble with making phone calls and asking for help – I’m just embarrassed to ask her to do it for me because “IT SHOULDN”T BE A BIG DEAL”. She does sometimes make my appointments for the dentist because if I miss a teeth cleaning it grosses her out.
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