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What You Should Know If Someone With an Illness Tells You They Feel 'Weird'

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“OK, weird how?”

It’s a question that’s hard to answer because I describe a feeling as “weird” for a reason, but it’s a question I’m grateful I get asked. It tells me that my doctor cares, which seems like something that should be obvious, and when it’s not it can feel devastating.

When I was first diagnosed with Lyme disease and Hashimoto’s thyroiditis I could tell you exactly what was bothering me. All of my joints were in a stiff pain, I had a constant stabbing pain in my stomach, and I could barely keep myself awake. A few months later though, I had a new issue, that I felt was difficult to explain. All of my limbs had this strange feeling, it wasn’t tingling, it was just “weird.” I also often felt dizzy or lightheaded.

I had my diagnosis of Lyme and I thought this was related, so I went to an infectious disease specialist. The doctor berated me and told me I couldn’t possibly have Lyme, without caring about my new symptoms. 

I went to a regular doctor within the next week, in the same university system as the previous doctor, that doctor also thought it was necessary to tell me the previous doctor said I didn’t have Lyme. I told them to forget about the Lyme, because something was really wrong. Another doctor came in to tell me I didn’t have Lyme and sent me on my way.

It turns out a have postural orthostatic tachycardia syndrome (POTS), which is a condition where my blood pressure drops and my heart rate rises when I go from a sitting to standing position. This condition does imply that I have the very real possibility of passing out, and in case you were wondering, seems to have a correlation with Lyme disease. 

Luckily, before this diagnosis, I had friends who cared about my new sensations, who walked with me when I felt I couldn’t, who didn’t mind when I told them how “weird” my arm was feeling and how “weird” my other arm was feeling and how my other arm still felt “weird.”

POTS comes on quickly and can have the most immediate threat to my health, and yet it is the most difficult to describe when it is more than just lightheadedness. I often just tell those around me that I feel “weird” or “I feel like I’m going to pass out.” I don’t say this to be silly, even though I feel ridiculous saying it. I say it because someone should know something is wrong.

My often inability to describe what I’m feeling when I’m feeling it isn’t just a Lyme problem or a POTS problem or even a thyroid problem. It’s a serious problem. What if I don’t know what is causing it and why I am feeling that way? What if I know exactly what’s causing it? What if it’s life-threatening and nothing is done about it?

Everyone needs to know that if anyone suddenly tells you they feel “weird,” it means “Pay attention to me, acknowledge that something is wrong.” It’s easier said than done, especially if the “weird” feeling doesn’t feel that bad or that person often feels “weird.” And that’s an easy thought for someone with chronic ailments, because you can often have so many things feeling wrong with you that one little new thing doesn’t feel that bad. Sure, you may feel embarrassed after finding out it was nothing (it’s happened to me on a few occasions). What’s worse, though, is finding out that it is something. So please, don’t allow anyone to ignore that “weird” feeling, be it yourself, your friend, and especially your doctor.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

Originally published: June 20, 2016
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