When Doctors and Hospitals Cause Anxiety While Searching for a Diagnosis

I hate going to the doctor. I’ve always been terrified of hospitals and being around people who are sick. Now that I’ve been fighting an undiagnosed illness for the past six months, hospitals and doctors bring a whole new round of anxiety.

Will the doctor believe me or just dismiss my pain?

Will he be able to actually help me?

Will they finally know what’s causing this?

Because of all these questions, I had been getting really stressed about appointments with new doctors. It wasn’t until my therapist asked me if I had any doctors I trust that I realized the problem isn’t with them, it’s with me.

After leaving so many appointments with no answers, I started to fear that no doctor would ever be able to help me. I saw their questions as them not believing my symptoms, and their lack of a diagnosis as an inability to help.

Recently, I realized a solution to this problem. Now, I don’t go into appointments hoping for a diagnosis. That would be amazing, but what is more important is that the doctor understands my concerns. I can’t control their knowledge or what they take from what I say, but I can make sure that I am heard. That they understand that my pain is constant, real, and very difficult to live with. They might not have all the answers, but they can still help me along my journey.

This week I was able to put these new goals to the test. I saw a pain specialist for the third time, and the past two times I had left the appointment frustrated that he wasn’t doing enough. This time, I made it clear from the beginning of the appointment how much pain I was in, and how severely it was affecting my life. I made it clear that this pain was making me question returning for my senior year of college. But more importantly, I didn’t stop there. When he tried to prescribe a stronger version of the medication I had previously tried, I asked him why he thought this would be different? After a few more questions he changed his mind and decided to experiment with a totally new class of medications. At the end of the appointment, instead of his usual, “We will get there, but it might take time,” he finally told me, “I don’t know what else to try if this doesn’t work. But if you’re not better in three weeks, come back here and I will refer you to other people who can help.”

While it still wasn’t an answer, and he repeatedly told me he didn’t know what was causing the problem, it was the first time I left an appointment feeling optimistic. I had been heard – he knew that the pain was a major problem in my life. We had a plan to try to fix it, a new plan, more intensive than any previous plans. And, we had a back-up plan with more experts if it got out of his league.

Today was another test of this theory. I saw a neurologist for “headaches and fatigue.” Going into the appointment, I had a feeling that nothing was going to be wrong with me in the neuro exam. Normally, this would have caused me to be so anxious I would barely answer questions, but today I decided to make the most of it. I was there anyway, I might as well see what I could learn.

While this doctor couldn’t give me a diagnosis either, and also claimed “there must be something else going on,” I still left feeling optimistic. Once again, I was honest about how these problems affected my everyday life and I actually felt heard. I made sure he ordered tests to rule out neurological causes, even though it was unlikely. I questioned why he ordered the blood work he did. And I promised to follow up in three weeks no matter what the results were. My persistence paid off – not only did I get the tests ordered, but I got referred to a doctor he believes will actually be able to help me.

Often, when you’re undiagnosed, it’s easy to let doctors talk down to you, or belittle your symptoms. While it is never easy, being honest about your symptoms can be unbelievably helpful. Even if you don’t get the diagnosis you’re hoping for, every appointment can get you one step closer.