I know many of us struggle to find the right fit for our health care teams and providers. Over the years, I have had my fair share of navigating the health care system and new providers. Having lived in 9 different cities and states, the past decade has been full of many care transitions and searches for all different types of health care providers.
Personally, I can relate to the challenge of how difficult it can be to find the right fit! As a young child, I was absolutely terrified of the first endocrinologist that initially diagnosed me with Type 1 Diabetes. Sure, the diagnosis itself was scary enough, but something about this doc’s bedside manner and somewhat cold personality had my hiding under the covers in the hospital bed every time he paid my room a visit.
At age 9, hiding under the covers to avoid this scary doctor was a possibility, but I know many who feel this way about their current care providers. Dreading interactions with a healthcare provider makes it even harder to achieve your health and wellness goals. As adults and parents, “hiding under the covers” usually isn’t an option, and yet somehow we need to find the strength to advocate for ourselves (or our little ones) to get the best care we can find.
There are a lot of factors to consider as you select a provider, and the first point of contact isn’t always a perfect match.
In my situation, the first endocrinologist didn’t pan out. Thankfully, soon after my diagnosis I was connected with a new endocrinologist, and it was a much better fit! I remember how transformative his kind and caring bedside manner was, something I still admire to this day. This endo went on to become a very trusted provider that followed me into adulthood and inspired me to pursue my career as a diabetes educator. Despite some expected turbulence and challenges in managing my diabetes through adolescence and college, I always felt supported by my care team. Actually, as the story goes… I loved this provider so much that I stayed in the pediatric endocrinology practice until my early twenties!
After more than 10 years of care, I remember the fear of leaving this practice and finding a new adult endocrinologist. Gone were the days of bringing my parents along for visits, and off I went going to a completely new office and hoping a new stranger would be competent, kind, and somehow understand the weight of how much it takes to manage Type 1 Diabetes. Would I be able to find someone who could help me along the journey and help me feel supported along the way?
After taking some recommendations from my previous health care team and other diabetes friends, I narrowed in on my choice and hoped for the best. Spoiler alert: I’ve continued under this provider’s care for more than 10 years, crossing state lines and even buying airfare to return home for visits (before virtual visits were a thing). Having someone in your corner who wants what you want is a powerful tool in diabetes management. However, that’s not to say that I haven’t also experienced some epic failures with other new practices- the time I waited for 3 hours, the time I was told “you don’t look like you have diabetes so I’m sure everything is fine”, the time where my HIPAA information was publicly disclosed in the waiting room, or when I wasn’t able to get a refill on a prescription that I legitimately needed.
It’s not uncommon that I hear stories from others about negative experiences at the doctor’s office that absolutely take my breath away in the worst of ways. One thing is for sure, living with diabetes is hard enough and having a provider that isn’t in your corner only makes the journey harder. Knowing the unique challenges of managing diabetes, it makes my stomach flip to hear stories about friction, arguments, and diabetes-shaming during office visits, yet (disappointingly) it still happens. If you find yourself in perpetual dread of going to the doctor’s office, or leaving the office always feeling demoralized, it is time to reconsider your options.
If you haven’t found the right fit yet, here are a few guiding principles to help you navigate towards better care:
What to look for and how to find a healthcare team
- Cross-check your experience with others’ experiences- Thankfully, it’s easy to find an opinion on the internet, and many patients are becoming more vocal about their experiences at the doctor. If you’re wondering if you had an “off visit” after being bothered by some aspect of your encounter, sometimes it’s helpful to cross-check your experience with the opinions of others to see if your experience may be consistent with others’. This can be as simple as searching your provider’s name or office to locate reviews. Sometimes bringing a friend or a family member along as another set of ears can also help put your experience into context. Just remember: some (free) advice can be worth what you pay for it (…nothing).
- You deserve to be treated with dignity and respect- No exceptions. If you are not being treated the way you wish to be treated, it’s time to make a change. You are in the driver’s seat of your health care and should feel empowered to make a change if you need to do so.
- Make a list of non-negotiables. What are you willing and not willing to accept from the office? If you can’t stand waiting for an appointment, don’t wait! If you expect to be treated with kindness and compassion, don’t tolerate anything otherwise. If you need someone who will answer all your questions, don’t settle until you find someone who patiently answers until you feel comfortable. Remember, at the end of the day you are the one footing the bill for the visit. You should get what you pay for (and be highly satisfied with the care you receive). It is perfectly okay to mention any of these during a visit (eg, Yes, doc I’m feeling great but the two-hour wait today is really unbearable).
- Speak up- If something happens during your visit that doesn’t sit well with you, say something! In the moment, this can be really hard to do especially if you’re feeling caught off guard. Sometimes the words only come to us after the fact. If this is the case, consider placing a call to the practice manager to discuss your specific concerns and see if there is a way to work through the issue- you may be surprised how often this happens. It’s possible you could be matched with a different provider in the office that may be a better match for your needs. Additionally, many practices provide quality surveys after your appointment- this is an ideal time to submit your general feedback about the visit, wait time, and overall experience. Tip: these surveys and comments are often published and shared with the whole office (so keep this in mind and try not to get too heated about your experiences).
- Give yourself the grace to move on when it’s time. When you know it’s time to move along, do so. There is nothing requiring you to go back for more misery if you know it will only make you more frustrated or unhappy. Make an appointment elsewhere and continue along your journey towards health and happiness. Sometimes clients wonder if they need to explain their departure from a practice- it’s not a requirement. Good etiquette would suggest making sure to cancel any scheduled appointments before you do depart, in order to be considerate of other patients of the practice who may need to be seen sooner. It doesn’t need to be a big, ugly breakup.
- During searches, ask around for recommendations and do your homework! Many in the diabetes community (diabetes groups, events, podcasts, and support communities) openly share this information and can be a true gold mine! I have seen many posts on social media and forums asking for endocrinologist recommendations. If you choose this route, specifically ask about what others like AND dislike about suggested providers or practices so you have a better sense of what to expect.
A note on Insurance coverage in the USA: Health Insurance companies provide search engines on their websites to help members locate in-network care providers in their area. This is a helpful place to start and often can come with the added benefit of cost estimations for certain types of visits. Occasionally, you may not be able to locate someone in your network and/or prefer to select an out-of-network provider. Generally speaking, choosing an out-of-network provider will require you to pay more for a visit (but is not a deal-breaker most of the time). For example, your coverage for in-network coverage may be 90% paid by insurance and 10% paid by you vs 80% paid by insurance vs 20% paid by you for an out-of-network provider.
- Ask to meet a new doc before you hire them- Some offices will offer a “meet the doctor” visit before you “hire” them as your provider.
- Consider virtual care. The pandemic has really expanded many offerings for virtual care, especially large health systems and academic medical centers. If you live in an area where care is difficult to find, consider searching for hospitals and health systems out of state who provide virtual visits. As reimbursement for telehealth continues to improve in the future, this will continue to gain popularity.
Most importantly, trust your gut! You will know when you have found someone that gets you and wants to partner to help you achieve your health goals. Sometimes these things can take time but generally, I’ve found that when on the hunt for a care provider, you’ll know in a split second that you can either trust this person or need to continue the search.
The key word is in your last paragraph – “partner with” – it is our journey.
This was very helpful. My worst experience came after moving to a new city (I got spoiled by my first Endo with whom I stayed for close to 30 years). This new Endo – before saying hello and giving his name – said (and I quote, I will never ever forget this) “…It is impossible for someone like you to have such good labs…” I was stunned and offended. Was he one of those who firmly believes if anyone is Dx’d with any type of D, they MUST be Dx’d with 3 co-morbidities: stupidity, laziness and a propensity to lie?!?!
Fortunately I had been a Dexcom-er for many years, and brought a printout. CGM’s don’t lie and you can’t “erase and put in another number in the bg’s area”. I told the guy I am smart, disciplined, and dgood at math. I promised I would bring a Mensa Membership card to my next appt. There was no next appt. And the Mensa card belonged to my mother, I kept it after she died and if I hold it right, you can’t see the first name.
There is enough shaming, blaming etc for people with diabetes of any type. You’d think someone board certified in Endo would know better. Apparently not.
Love your feedback, and hate that experience Kristina, I really wish it were not so common. Bravo for advocating for yourself and our community!