When I Ignored a Serious Medical Condition Because of a Doctor's Disbelief

I have had a swollen tongue for two years.

Strange way to start an article, isn’t it? I’m writing this, while still emotional, to plead with you to trust yourself and what you know of your own body.

So. Yes. My tongue has been swollen for two years and I was shocked when it rapidly shrunk.

You’d think that wouldn’t be a surprise to someone. How can that happen? How can that be an alarming discovery? Yet it was. Because I allowed the doctors who didn’t believe me to make me disbelieve myself.

They weren’t cruel doctors. They actually, literally, saved my life during that hospital stay. They simply truly thought I was wrong. Prednisone can sometimes cause the sensation of a swollen tongue. They had seen my tongue be larger, protruding from my mouth. They had seen my pictures of how bad it can get. In comparison, this was not as large. But I knew my tongue was normally tiny. I knew it was taking up too much space. I knew it still hurt and tingled.

Yet, over the period of two weeks, I was successfully, systematically, convinced to feel sillier and sillier for complaining about it. I was made to feel wrong and I began to distrust myself. I was told I was experiencing this sensation, not an actuality.

To explain more, I have idiopathic angioedema. It is a condition that randomly swells various body parts. Tongue, lips, feet, etc…I was actually in the hospital at the time for my idiopathic angioedema and anaphylaxis condition. We were tapering me off of prednisone, because treatment was failing.

By that point, I had had my tongue swell to many different sizes and I had pictures of that. But I did not have pictures of my tongue pre-angioedema days. It never occurred to me to take pictures of my tongue size, prior to having tongue swelling issues. I had no proof. I had no way to show them how tiny my tongue normally is, and my tongue is really quite small. Smaller than the norm. But I had nothing to show myself or them, nothing to clear up the debate. Yes, during that stay my tongue could fit in my mouth, was not protruding, but it was still not my normal. Not even close.

That entire two week stay I kept informing them that my tongue was still swollen. They made it quite clear they did not agree. I was insistent, but did slowly start to say it quieter, with less assuredness. I gradually started to wonder if they were right and it truly was merely a sensation. My tongue had been swelling to much larger sizes for many months prior, and eventually I started to question my own memories. My own body. My own sensations.

When I was discharged I was embarrassed to see that they wrote in my file that I was constantly insisting that my tongue was still swollen, when it wasn’t. I was so humiliated and felt so ashamed. Wondering if I was delusional. (Although I did pass the psych evaluation I was given in there, so they were not claiming I was delusional. I just worried I was. They were simply claiming I was mistaken.) Reading that in my discharge papers effectively shut me up. I stopped mentioning my tongue. I stopped believing myself.

Every so often, over the last two years, I would rebel in my mind, about the belief my tongue was always this big. Especially on the days when it felt even bigger. On those days I would take pictures. And wonder. Then, the sense of shame and doubt would come pouring back and I would decide to not mention it to my doctor.

My doctor is amazing. He is a fantastic doctor. If I had come to him and said, “My tongue is still swollen. They are wrong,” he would have believed me. The problem was that I no longer believed myself.

A few weeks ago I became very sick, with very bad lungs. I was put on prednisone initially. It didn’t help much. I was then put on a stronger steroid. As the first dose started to kick in I yelled for my partner, telling him my mouth felt weird. Was tingling. He came running. Tingling and weird is bad. That happens when my tongue swells enormously and happens when it rapidly shrinks. We were both expecting an enormous tongue. We waited in fear.

Instead, my tongue shrunk three sizes smaller in less than a minute. That was the surprise of my life. It felt so strange and uncomfortable. Too roomy. It also felt like an enormous emotional blow, on multiple levels. This meant that my idiopathic angioedema has been completely active for two years, despite the meds I’ve been on for it. It also meant that my doubt in myself prevented me from seeking more help for a very serious medical condition.

That’s bad. A two week hospital stay and one piece of paper made it so that I didn’t trust myself enough to know my own tongue has indeed been swollen all this time. That I wasn’t wrong.

It’s scary to realize how much power and belief I put in people who didn’t know me. I’ve lived with my tongue my entire life, yet, somehow, I was able to be convinced that I was only experiencing the sensation of swelling. What’s even worse is that I am diagnosed with a condition that causes this and I still allowed my own truth to be overshadowed by shame and others “expert” opinions.

Now, I have the task of fixing this. Honoring my mind and my body. Seeking better treatment for my angioedema. Learning to trust in myself again.

Please. Trust yourself. You know your body better than anyone else. This is so important. Don’t allow the doubt of others to smother your own truth.

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Gettyimage by: JZhuk