Anyone who has experienced a chronic condition knows how daunting it can be to seek out medical care. It can be easy to fall into shame when met with the stigma of urinary tract infections, especially with how sensitive the realities of the condition are. Many visitors to our website report being brushed off by medical workers en masse or resigning to having their illness go untreated when met with inaccurate test results. This is the sad but the true reality of recurrent and chronic UTI.
This is also why it is so important that we learn to become our own advocates. When doctors operate using outdated information, it becomes the burden of the patient to make sure their voice is heard and respected. If you have come to this blog after living with UTI symptoms, know it is your right as a patient to ask questions, refuse or further consider procedures, request advanced testing, insist on treatment, and even inform healthcare workers of the latest research. In this blog, we aim to guide how to speak up for yourself in medical settings when you live with UTI.
Being Your Own Advocate
Naturally, when it comes to advocating for yourself in a medical setting, it is much easier said than done to assert yourself. Falling into desperation after leaving a healthcare facility with all the symptoms of a UTI but no treatment prescribed is understandable. Yet, as a patient, you have choices! While UTI research is still underdeveloped, there are ways to make your voice heard by healthcare professionals and as a result, have more fruitful and compassionate care.
But the initiative to advocate for yourself is ultimately on you. It can be intimidating to speak up for yourself. The reality is that most healthcare professionals are operating off of old and inaccurate information. As Ruth Kritz, a nurse practitioner who has specialized in the treatment of UTI for decades, has said: “if it looks like a duck, walks like a duck, and quacks like a duck. It's gotta be a duck. And so to have somebody who has pain, urgency, frequency, and burning, and yet they're told they don't have an infection because a urine culture was negative, who do you believe? Are you treating a lab result? Or are you treating a person?”
It is our unfortunate responsibility to make our voices heard by healthcare workers. The good news is that although healthcare professionals can be dismissive, some can be receptive to new information or your voice as a patient. Our founder, Laura Helgeson, encountered this firsthand. She experienced the following: “I gave the emergency department doctor my history of UTI. The doctor offered me a urine test and I responded ‘Those don’t work.’ Her response was, ‘I know.’ Her recognition of the inaccuracy of the dipstick and urine culture was such a breath of fresh air. To be recognized as a human being having a problem with no reliable source of testing available, both to the doctor and to me, was such a relief. I felt seen.”
While hopelessness and desperation around the state of UTI treatment are completely understandable, it becomes all the more important that those living with UTI make sure to speak up for themselves.
Informing Yourself
One of the most crucial steps in learning how to use your voice is educating yourself about the condition. A factor in why UTI treatment is so backward is that healthcare professionals are reliant on information that has been proven inaccurate or straight-up untrue. UTI–especially recurrent or chronic UTI–is a complex disease that often doctors can be unaware of the nuances. New research often doesn’t breach into doctors' offices, and so it becomes the responsibility of the patient to inform themselves about the ins and outs of urinary tract infections.
On our website, we have a variety of resources that can help you begin your journey in educating yourself about UTI. Our learning center has links to studies, such as one disproving that urine is sterile or research on the flaws of standard testing. We also have a collection of blogs on the management and basics of UTIs that you can read to learn more.
Ultimately it’s important to remember that although you are not a medical professional, you have
choices and agency over your body. Informing yourself about UTI as a condition is the first step in being able to better understand what is going on in your body, and therefore becoming your best advocate. Having a general understanding of your chronic illness is a great method to feel more confident to speak up to healthcare professionals and even to educate them on developments they may be unaware of.
Preparing for Appointments
A step that shouldn’t be underestimated when it comes to preparing for your appointment is writing down your thoughts. By thinking through your symptoms and figuring out how to communicate them ahead of time it becomes easier to advocate to a doctor. Our website has downloadable resources that can help you parse through factors to consider before an appointment. Our recommendation is to write down your symptoms and reflect on how they feel, where you feel them, how often they come up, and when the symptoms began. Only by having an understanding of how your symptoms impact your life can you better communicate with your healthcare provider.
Another aspect you should consider prior to your appointment is testing options. Sometimes doctors will conclude from testing that doesn’t match your symptoms, in which case it becomes crucial to ask questions. Looking inward and figuring out whether your results match your symptoms is deeply important.
A sample idea of some questions that you could potentially ask about testing include:
“The results of the tests don’t seem to match my symptoms. Is it possible that I still might have an infection, even with negative results?”
“I’ve heard of advanced testing that might make things clearer, what do you think?”
As the patient you also always have the right to think about or refuse procedures that your provider may offer. Don’t feel pressured to automatically agree to procedures you may be unsure about; instead, take time away to consider it thoroughly and ask questions.
Some sample questions that could be helpful to ask about procedures are:
Does this procedure cause a flare-up?
What percentage of people who have this procedure have success? How many people find no difference or become worse?
Who will do the procedure?
And most importantly: “Let me think about it.”
Remember, that as a patient and the best expert on your body, you always have the right to ask questions, think about things further, and decline procedures that don’t feel right to you.
Fostering Change
The current state of UTI awareness can lead many living with this condition to feel shame in discussing it. However, as UTIs are the most common outpatient infection in the US and affect over 400 million people worldwide annually, there should be no stigma around being open about this illness.
While it may be daunting to be honest and self-confident in talking about your UTI, by doing so we take one step further in normalizing this condition. At UTI Health Alliance we firmly believe that recurrent and chronic UTI is nothing to be ashamed of and instead should be the topic of open and honest communication in research and health fields, and with friends and family. We are doing work every day to dispel the stigma around UTI and increase awareness in the public and health care.