The Hard Realities I've Faced After My Doctor Told Me, 'You're Just Weird'
Last year, that was my rheumatologist’s assessment at one of my regularly scheduled, check-in-and-monitor-blood-work appointments.
My younger sister has been saying the same thing since we were kids. My 10-year-old son also tells me that from time-to-time.
I’ve always been proud to be a bit weird. Being weird meant I was interesting and special and wouldn’t be confused with anyone else. Being weird meant there were things that made me “uniquely Wendy” – the fact that I’ve never learned how to whistle, have spent my entire life living within the same zip code and can recite Steve Martin’s opening monologue from the film “Father of the Bride.”
Usually, I’m OK if someone calls me weird. Except, when it comes to anything medical, and then it’s my opinion that “weird” generally isn’t good. You can’t cure “weird.” You can’t even treat “weird.” All you can do is endure “weird.”
And that’s what I’ve been doing since 2010.
At the end of that exam, my rheumatologist had commented, “You’re not working. Your son is at school during the day. But your leg is worse. You’re just weird.”
Maybe after treating me for seven years, my doctor felt he could be more informal with me, joking even. Or maybe he was frustrated that once again my symptoms didn’t add up and make sense.
I kept my composure in the exam room. I told him that it wasn’t the first time someone had called me weird, and I was sure it wouldn’t be the last. But outside the office, as my husband, Paul, and I waited for the elevator, feelings of helplessness and hopelessness overwhelmed me, and I broke down crying. I looked at Paul and said, “I don’t want to be weird. I don’t want my leg to be weird. You can’t fix weird.”
Paul looked at me and took my hand. “I know,” he said. He’s with me at every appointment; he knows I leave the office either feeling a level of acceptance or a level of despair. And he knows there’s no right thing to say to make it better. We got into the elevator, and he held me as I cried. We got off the elevator, and held hands as we walked to our car.
Paul’s used to my weird ways. After almost two decades of marriage, he’s used to me yelling at the TV during a basketball game, he’s used to me eating cold leftover Thanksgiving turkey dipped in ketchup. But navigating an unpredictable, chronic medical condition is something neither one of us completely knows how to do.
For a week after that appointment, I kept replaying my doctor’s comment. It may not have been the best example of a reassuring bed-side manner, but it was honest. And that’s his style. He doesn’t enter that exam room to put me at ease and chit-chat. He’s there to monitor my symptoms and make comparisons. He tells me what he knows, he tells me what does and doesn’t make sense, and he tells me what we’re going to try next.
One of the tests that measures inflammation was markedly higher at that appointment compared to the last time it had been checked. It would seem to reason that my inflammation levels would be lower during the school year as opposed to during the summer. During the summer, my son and I were busy — playing handball, visiting multiple museums around southern California, going on bike rides, and me just trying to keep up with the everyday energy of a young boy. Now that our son was back in school, most of my days (at least during school hours) were drastically less physical than they had been during the summer. And yet I was experiencing just as much daily pain, and the tests were confirming it. I was feeling bad and testing worse. It was weird.
To a certain extent, that’s the essence of autoimmune diseases. They’re unpredictable, and they don’t follow any logical sequence. And I’m a person who likes order and structure and routine. I keep going to these doctor’s appointments looking for answers, hoping for relief. Because I’m only 42, and my son’s only 10. The thought of a lifetime of daily pain is overwhelming, and if I stay with that thought I’ll collapse under its weight. I keep searching for answers, because I’m trying to be the healthiest version of myself – for my son, my husband, and me.
I have a disease most people have never heard of. A disease that isn’t easily diagnosed, that isn’t easily treated, and that doesn’t follow a predictable pattern. The name in itself means that doctors don’t truly know what it is. Undifferentiated connective tissue disease is a mix of symptoms taken from lupus, rheumatoid arthritis, and myositis. I have a little bit of all of those while not really having any of those.
Inflammation may fluctuate, and for no apparent reason. My level of fatigue may vary, and not in direct relation to the quality and quantity of my sleep. Sometimes my legs may feel heavy as if weights are dragging behind me. Sometimes my left calf may feel tight and hard. Sometimes my knees may ache and creak. And some times will be better than other times.
Maybe it’s not me that’s weird. Maybe it’s this disease.
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