Unexplained UTI? Don’t Let Anyone Gaslight You
If you live with ongoing urinary tract issues, you’ve probably been through this frustrating cycle at least once.
You visit your doctor’s office. A lab test is performed. It comes back negative. There’s nothing to indicate what’s causing the pain, burning and constant pressure that keeps you running to the bathroom all day (and maybe all night, too).
At this point, if your doctor tells you there’s nothing wrong, you should definitely feel worried.
People who live with chronic health conditions (such as UTIs) often feel gaslighted by medical providers who make light of symptoms or overlook the need to learn more about what’s actually happening.
Do you feel heard – or dismissed?
The truth is, most UTI tests are designed to identify only one or two potential causes of infection. (Did you know that standard tests miss up to 80% of all UTIs?)
Negative lab results can led to gaslighting, which begins when your doctor:
Seems to minimize or explain away your symptoms
Suggests that stress or anxiety are the sole cause of what you’re feeling
Fails to recommend further testing to find the root cause
Discourages you from seeking a second opinion or seeing a specialist
Gaslighting is also a factor in what one leading urologist calls “the doctor dance” – an infuriating search for better care that can go on for months, even years.
How to advocate for yourself in the doctor’s office
Medical gaslighting is dangerous. Not only does it delay the process of finding the right treatment, but it can also leave you feeling confused, ashamed and angry. Many people who struggle to find effective UTI care develop mental health issues such as anxiety or depression.
Negative test results don’t mean your symptoms aren’t real. They mean the right answer hasn’t been found yet. Recurrent or frequent UTIs often require thorough investigation and specialized treatment, including lifestyle changes that foster a healthier biome in your urinary tract.
If you feel gaslighted by your current doctor, here are steps you can take.
Speak up. Affirm that you know your body and your symptoms are real.
Ask about advanced tests that can offer more insights.
If your doctor will not consider further tests, ask for this to be documented in your medical records. (Often, doctors will agree to order additional tests when you take this step.)
If you sense your doctor is not listening and working with you, seek out better care.
When friends and family gaslight you
Unfortunately, your medical provider may not be the only person who overlooks or minimizes your condition. Friends and family can be totally dismissive, too. How many of these clueless comments have you heard before?
“Well, I’ve had two children. A UTI is nothing compared to labor pains!”
“People get UTIs all the time. It’s really no big deal.”
“Are you sure you’re not just stressed out? It can’t be that bad.”
“All you need to do is drink cranberry juice. It worked for me.”
How to respond when someone is unsupportive
Since we’re all recovering from the winter holidays, you may be feeling especially upset by insensitive comments you’ve heard lately. Here are suggestions for coping with medical gaslighting now and in the future.
Recover from confrontations by taking time for yourself. Living with an unexplained UTI takes a lot of energy, especially when people fail to recognize what you’re going through. Practice extra self-care whenever you can.
Spend more time with people who support you. With the holiday season behind us, you no longer have to listen to Aunt Sally go on and on about horrible “home cures” for UTIs. Get together with friends who understand and will listen with compassion.
Remind yourself that your experiences are valid. Not only is this crucial in working with your medical team, but also in affirming your everyday needs. Your health is important and you deserve the best possible care.
If you do find yourself cornered by someone who probes, dismisses your pain or does anything else that makes you feel uncomfortable, keep these responses handy:
“Even if my symptoms don’t make sense to you, they are real.”
“I prefer to discuss my UTI with my doctors. Let’s chat about something else.”
“It would be great if you would just listen to me. I’m not asking for advice.”
“I’d rather not discuss my health care journey right now.”
“I prefer that my body not be a topic of conversation.”
“This is making me uncomfortable. Let’s stop.”
“My body is telling me it needs to rest.” (Then turn and walk away.)
Sometimes, those nosy questions have a different meaning
Every now and then, someone will cross a boundary in conversation with you because they’re also struggling with a chronic or recurrent UTI. Depending on the situation, you may want to ask: “Is this something you want to learn more about?”
The good news is that you don’t have to explain everything. Just point them to the resources in the MyUTI Education Center. Chances are they’ll be very grateful, especially if they’ve been feeling gaslighted, too.
