I had a scrap of paper with me, listing the things I wanted to bring up. I’d worked through it many times in my mind, replaying what was to come. I wanted to be taken seriously. This time, I felt ready.
Reading “Female patients with autoimmune diseases face longer diagnostic delays” in Healthcare Today brought that appointment back to me. The article covers a study in which women reported longer waits for an autoimmune diagnosis and more frequent misattribution of their symptoms to psychiatric or psychosomatic causes than men. What I kept thinking about was the feeling of knowing something was off, while wondering whether I was becoming a hypochondriac.
I can go back years through different doctor encounters. I brought up a number of symptoms, but many could be explained by other life factors. Sure, I get that. Anxiety. Perimenopause. I tried to make sense of those explanations, but eventually they weren’t making sense to me.
My eye doctors were the common thread. Across years and moves, they kept looking for an underlying issue and pushing me to pursue it.
I should be transparent. I didn’t always pursue things right away. Sometimes it would take the next event for me to jumpstart appointments again. I had negative experiences in the beginning, so it makes it tough. It’s tiresome, and then you get anxiety. I could recognize my eye doctor’s frustration, too. He wanted to help, but I wasn’t always following through on what we kept talking about.
By the time I brought that scrap of paper to my regular doctor’s office, I’d done the background work. My symptoms, previous tests, family history, and my eye doctor’s concerns were all coming together. I finally was ready to pursue this fearlessly. I felt empowered by giving a warning: “My eye doc said come back with an update.
”It was the PA or NP I saw that day, and I could see the lightbulb going off. Her demeanor changed. More upright and attentive, she agreed there was a possibility and said she would take it to the doctor and follow up. It was a changing point.
About six months later, after a move, I developed pain in one eye. It turned out to be optic neuritis. Another eye doctor listened to my background, saw something was off, and sent me straight to the ER for an MRI. Well, that was the checkup of a lifetime. That afternoon, in the middle of a blizzard, I left the hospital with a working diagnosis of MS.
Don’t get me wrong, there was shock. This could be a serious thing. But I tell you, finally putting a name to it felt relieving and satisfying. And yes, I wanted to tell my past doctors, “I told you so.
”What helped me was getting it out of my head and then looking at it critically. Having done the background work, I felt confident. I still often come with a list. I still rehearse it in my brain. I still wonder: Is this an MS thing? Is it something different? And then I bring it to the doctor.It’s the collaboration. When I am forthcoming and taking charge, we’re able to solve problems or allay concerns together, and quicker. That also takes someone willing to listen and work through it with me.
If you’re still trying to figure it out, you’re not alone. What you’re experiencing deserves to be heard.
What has helped you feel heard by a doctor?