Making Endo Visits Suck Less

It's no secret that we all dread going to the endo. No matter how much we like our docs, there always seems to be a level of anxiety that accompanies us to the office. If nothing else, this visit is a strong reminder of the chronic illness that we are living with and managing every day. After more than 20 years of doctor visits and a handful of different endocrinologists, I've learned some ways to make these trips suck a little less.

Treat. Yo. Self.

This idea was actually inspired by my older brother. Like most normal humans, once a year he goes for blood work. He's not the most comfortable with docs and needles, so after his appointment he stops for a Snickers bar. After hearing my mom talking about this I thought, why don't I get in on that?

It doesn't have to be candy (unless you're low). It can be something a little more betes-friendly, and it doesn't have to only be before/after your endo appointment. When I go into the pharmacy to pick up my medications, I look for a little something for myself. Whether it's a mini-cactus for my office, a Justin's PB cup, or a new face mask; it makes the trip a little happier. 

After my endo appointment I'll do a little something more - stop at Starbucks or Playa Bowls, or I'll book a facial for the same day. It can be something small (or big!), but you get the general idea - do something pleasant for you.

Write out your questions.

If you're like me, you have a lot of thoughts that gather in the couple months between appointments. It's easy to let these float around in your head and then have your mind go totally blank once your butt hits the exam table. This can lead to feeling flustered and defeated after the appointment. Something I've started doing is writing down my thoughts and questions as they come, and bringing the list with me when I go to the doctor. That way, when my doc asks how things are going I actually have something productive to work on.

Stand your ground.

It's essential as a type 1 to have an endo who is willing to work with you. Someone who is on your team, not trying to act as your boss. If you have ideas - taking a pump vacation, switching insulin, trying a sensor - speak up! This is your time to advocate for yourself. Your doc may not be on board right away, but they should listen to your input and hear what you have to say. After all, you are the one living with this disease 24/7.

Bottom Line.

Medical management can be boring, at best. But mixing in little joys and treats when we can acts to improve our outlook and quality of life.

The Stamp of Compliance

If you're a type one, you've likely accumulated a litany of diagnoses over your lifetime. Hashimotos, celiac, lupus, the works. They pile on, accruing in your chart over the years. Maybe this bothers you, maybe it doesn't. There's constant debate about the power of labels and how one's diagnostic label can help or hurt them if they over-identify with it. But the more time I spend in the medical field, the more I notice a label that doesn't seem to yield any benefit: compliant. Or, for our purposes, non-compliant.

Over time, doctors need to monitor your diagnoses and how you are managing your health. But seeing non-compliant or history of non-compliance tacked onto a patient chart tends to create an image in a provider's mind before they even meet their patient. There is a level of judgement that inevitably occurs once your diagnostic labels include compliance issues. Much like words that we no longer use due to the negative connotation and derogatory nature they became so closely linked with, compliance is beginning to get a bit of a bad rep. Why? To start, let's look at the definition:

source: www.dictionary.com

Obeying. Yielding. Not exactly words I would appreciate being used towards me as a patient. "You must obey your diabetes regimen." I'm trying to live my best life, not surrender at battle in Winterfell. I've heard certain healthcare providers talk about a shift toward using the word adherence, which I personally think is better. The bottom line is, the word compliance has developed a stigma. To have such a strong label as a diagnostic tool on a patient's chart is a risky move. It becomes easy to say, "This patient is non-compliant. I better not get my hopes up. They're probably not doing what they're supposed to."

This label extends beyond diabetes - it applies to all chronic illnesses, whether it's ESRD, epilepsy, or asthma. It can be so easy to say, "Well, this patient's non-compliant. They don't want to care for themselves," when this may not be the case. There is another approach. When assessing patients and families I prefer to ask, "Are you able to take your medications/follow your diet/etc. as prescribed?" Asking from a place of non-judgement and not-knowing allows space for the patient to ask for help if they need it. Maybe they aren't taking their medication because their insurance doesn't cover it. Maybe they're struggling with an underlying anxiety or depression, or could just benefit from some educational counseling. Simply labeling someone as non-compliant and leaving it at that eliminates any possibility for improvement. And people living with chronic illness deserve a chance for improvement. Being stuck in a place where they are struggling to care for themselves doesn't have to be a place where they remain.

So what now? Other than adherence, what words would you prefer to have used, as a patient or as a provider? I am curious to know.

It's Not You, It's My Insurance

Breaking up with your doctor

Is there anything more uncomfortable than a breakup? Especially one where there’s no bad blood (yet)? Perhaps not. Recently I had a change in insurance coverage. My new policy allows for lower copays and prescription discounts with a hospital group endocrinologist. Naturally, I jumped at this – I have only been seeing my adult endo for a couple of years, and while she is very kind and helpful, the pros outweighed the cons in regards to switching – especially cost wise.

As exciting as this switch is – as fellow T1Ds, you know how big a deal any decrease in out-of-pocket expense is – it has caused me a significant amount of worry. What an icky feeling, having to tell my doctor I am switching. I weighed the options on the drive to the office. What exactly would I say? Who would I tell first – the office staff, or the MD? Will they be offended? Will they fax my chart, or will I have to sign a whole heap of paperwork to release the records? As I sat with this discomfort, I felt an eerie sense of déjà vu. Thankfully, my APN and MD were incredibly gracious and understanding. I left the office with a bittersweet feeling. Reflecting on my visit, I felt familiarity wash over me – like I had just broken up with my endo.

So what to do if you’re in this jam?

Make your decision before you enter the office. Switching doctors is a big decision for someone with type 1. Typically the recommendation is to see your endocrinologist every 3 months. This is way more often than your annual PCP visit. If you’re super comfortable with your endo and are feeling secure financially, it may be worth the extra out of pocket to stay.

Stick to your decision. Once you make your decision, stick with it. Don’t waffle in the office. Professionally, the staff should understand that this is your decision even if they are sad to see you go. It’s okay to express these feelings on both ends, as long as no one gets carried away. Be kind, but firm. If you need a scapegoat, tell them you simply can’t afford to continue there. Blame your insurance. No one likes insurance anyway, doctors included.

Have your records faxed. Not all offices will do this, and some require a signed release of information. Be prepared to ask about it while you’re there, and have the fax number of your new doc handy. If they can’t fax it, they should be able to give you a hard copy to take with you to your new significant other.

Relationships – doctor relationships, romantic relationships, friendships – can be hard. Endings are usually inevitable. When it comes down to it, you gotta do you. As the wise men once sang, “every new beginning comes from some other beginning’s end.”