Living with urinary tract infections can be an isolating experience. While UTI is a common condition, the stigma around the disease nonetheless persists. When faced not only with a lack of adequate treatment options but also dismissal by healthcare providers, it can be easy to feel alone. That’s when it becomes all the more important to build a support system.
Despite the stigma around the condition, UTI is a regular occurrence in healthcare and our society. Some sources say that it is the most common outpatient infection and that it affects over 404 million people worldwide annually. Of those with female anatomy, 60% will experience a UTI within their lifetime, and around 30% of that population will go on to develop recurrent or chronic UTI. Safe to say, this is not a disease that is limited in scope.
If you are experiencing chronic or recurrent UTI you deserve to have a support network. This includes friends and family, as well other UTI patients and open and receptive healthcare providers. Consider taking the first step–however small–to find like-minded people who understand your health concerns.
Support Groups
As someone living with UTI, some of the best resources you have are other people also experiencing this illness. Not only can others with UTI provide community and support, but also potential resources. With a condition as misrepresented as chronic and recurrent UTI, having a group of people who understand what you’re going through and can also help gather information is crucial. Especially if you’re new to figuring out your UTI journey, support groups and other people experiencing this condition can help dispel myths and misconceptions and provide integral information.
The emotional benefits of having a community of people who get it can’t be understated. It is liberating to have contacts and friends and family you can reach out to who have gone through the same or similar things.
Finally, support groups can also help you find a doctor or treatment. By talking to other people and seeing what has and hasn’t worked for them, you can enter your doctor’s appointments more prepared and informed. Our site contains a selection of support group resources if you are interested in joining a group for UTI.
Friends and Family
Finding support from friends and family about your UTI can be harder than expected. With stigma and misinformation about UTIs abounding, it can be daunting to be vulnerable even with those who care for you. But asking trusted friends and family for support can be fruitful. In addition to providing emotional support, these loved ones may be able to help physically, such as with household tasks or pain management. It may help these trusted loved ones to better understand your pain and physical limits. Appropriate family members also can help with other supportive tasks, like doing research on your behalf or being backup during doctor’s visits.
Try to find the balance between being honest and not feeling as if you owe people information. While you have every right to be candid with your loved ones about your symptoms and your reality, your health is ultimately your business and never something you owe others. There is no shame in talking about your condition, and here at Let’s Talk UTI, we are big proponents of the power of transparency and ending the stigma around this very normal infection. But, we encourage you to set boundaries and heed your comfort level too.
Finding a Healthcare Provider
Finding a healthcare professional to help manage your UTI symptoms is perhaps the most challenging task of all. Due to flaws with the inaccuracy of testing and limited treatment options, many UTI patients can leave the doctor’s office feeling unheard or even dismissed. Finding a medical professional who will simply believe them can be exhausting and discouraging.
Support groups can be helpful with this conundrum as well. Many members have years of experience in navigating UTI. They can be quite helpful with ideas for your own journey.
When meeting with a medical professional, try to find a clinician who fits this criteria:
Who has an open mind, and will be receptive to hearing new research.
Who will listen to you and believe your experience.
Who you feel like you can ask questions and advocate for yourself.
Who you feel comfortable with, or that you feel you can trust.
Most importantly, know you have choices and the right to advocate for yourself. As the expert on your symptoms, you are your own best advocate. Don’t be afraid to ask questions, express your needs, or to request advanced testing. You deserve to have your voice heard.