When it comes to living with a chronic condition, the doctor-patient relationship will be one of the most important connections you ever build.
An estimated 1 in 10 people with inflammatory bowel disease (IBD) are initially misdiagnosed as having irritable bowel syndrome (IBS). Of these, 3 percent wait 5 or more years for the correct diagnosis.
It’s no wonder that many of us with IBD struggle to trust medical professionals when we’ve felt let down in the past.
In my case, I was one of the 3 percent who spent many years being told I “just” had IBS. Twelve years, in fact.
Not only does waiting a long time for a correct diagnosis potentially put patients at risk of more physical complications (which can arise when the disease is untreated or not properly managed), but it can also impact their mental health.
For many years after my misdiagnosis, I found it very difficult to trust medical professionals.
I didn’t feel reassured by test results, since they were wrong before. I didn’t feel confident in my medication (how could I know this was the right treatment?). And I found it very difficult to believe what my doctors were saying.
But even when it feels impossible, trusting your doctors is important.
Having a positive relationship with your medical team is vital for being able to share symptoms and to create an honest dialogue about your condition and treatment. It means you can advocate for yourself and your body and ensure you’re supported, which ultimately leads to one goal: feeling well.
If you’re having trouble with trust issues after being misdiagnosed, let’s talk about what might help.
I’ve wondered why we don’t spend more time supporting the mental health of IBD patients, especially when we’re first diagnosed. The initial flurry of appointments and treatments that can happen with a diagnosis means we’re left with little time to process the reality of living with a long-term condition.
Therapy can help you come to terms with a diagnosis and the emotional rollercoaster that comes with it. I personally went through stages of denial, anger, and “why me?” — all of which didn’t help my mistrust of doctors.
We might not realize that lack of trust is the issue and instead spend time getting multiple opinions and waste hours down a Google black hole.
Having cognitive behavioral therapy (CBT) helped me realize that all my behaviors centered around my mistrust of doctors, which I was then able to work on.
CBT may also help you identify faulty thought patterns, such as thinking your doctors don’t understand you. It can help you replace these with more realistic and logical ones, such as knowing your doctors are doing their best work with you and your body.
You don’t need to tell your medical team your life story, but honesty about your feelings can really help.
Frame this to talk about your mental health and what they can do to help. That could mean saying something like, “my previous misdiagnosis means I can find it really hard to trust doctors at first, so it would really help if you could take the time to explain my test results and help me feel included in my treatment plan.”
This can include simple things, like taking the time to call you to explain your results rather than sending a generic letter in the mail or asking your input at appointments.
I found that once I had a doctor who understood the impact my diagnosis had on my mental health, they did everything they could to accommodate me.
It’s important to not make sweeping generalizations like “all doctors don’t know what they’re talking about” and recognize that one bad experience doesn’t mean you can find a knowledgeable and supportive medical team.
If, after seeking support and explaining your situation, you still don’t feel comfortable, there’s nothing wrong with looking for a doctor who makes you feel more at ease.
One of the few downsides to the amazing online community we have for those of us with IBD is that we can end up comparing ourselves to others.
That may show up as wondering why they are responding better to medication or why their doctor has taken a different approach to yours.
We can often see “but my doctor said this…” play out on online forums, which demonstrates how even IBD specialists may differ in their viewpoints around IBD and treatments.
The biggest lesson for anyone with IBD is to recognize that we’re all so different. Your doctor may have a different background and different experiences to another, but also has more knowledge about your medical history.
While chatting with others can be helpful, recognize that they are not the expert on your condition. That role belongs to you and your doctor.
Another aspect of trusting your doctor is the thought of essentially handing over your body to somebody else.
One of the hardest things to accept is that you can’t completely control your condition. The thought of another person taking charge of it through treatments can be really difficult to accept.
This fear can be heightened when we feel as if only we know best or struggle to trust medical professionals with this responsibility.
When I was first diagnosed, I felt it was up to me to control my condition. At first, I refused to relinquish some control to my doctors or accept that my illness is ultimately uncontrollable and constantly changing.
Accepting that you can’t control every aspect of life with IBD is really important. Remember that referring to qualified experts isn’t losing control — it’s working with them and your body.
There’s no doubt that being misdiagnosed can really impact the trust you have in your medical team.
However, it’s really important to try and rebuild that trust, whether that’s through seeking counseling, being more open with your doctor, or finding one that will take your viewpoints on board.
When it comes to living with IBD, the doctor-patient relationship will be one of the most important connections you ever build, so it’s worth it to try and make it a long and healthy relationship.
Article originally appeared on January 26, 2021 on Bezzy’s sister site, Healthline. Last medically reviewed on January 25, 2021.
Medically reviewed on January 26, 2021
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