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Not Enough Providers Know About Autoimmune Conditions

I have been in the medical field for over 15 years. I’ve seen it from the inside out. I have seen providers of all kinds, from my "fellow" nurses, to nurse practitioners and physician assistants, as well as almost every kind of physician. Yet somehow, after all these years, providers never cease to amaze me. Truthfully, they sometimes blow my mind. They say things that I just can’t believe came out of their mouths.

Recent healthcare provider experience

Probably 3-ish weeks ago I was in urgent care for a respiratory illness that was awful. It still hasn't fully gone away, in fact! Turned out to be parainfluenza! The physician assistant I was assigned to came in and she was asking me all the typical questions: when did the symptoms start? Any fever? Sinus symptoms? etc. All was going well, and she seemed so kind.

Then the dreaded questions came, for me anyway. Are you having any pain or any fatigue? I think I pretty much huffed/laughed out loud, to which she looked at me like I had lost my mind. Which, with how awful I felt, could be true. But I said "Yes, I have increased fatigue, and increased pain. But honestly ma'am in times like these it's virtually impossible for me to tell if it's pain and fatigue due to this illness or the virus."

Educating my provider on lupus

She raised her head up and looked me dead in my eyes and said "Well you, Amber, are the only one right now who can give us that answer!" I let out a big sigh and was thankful for my mask. But If I had been at my normal baseline of health she would have gotten a firm but thorough explanation on how that is not how lupus works. This time she got a mini explanation which she was not thrilled about.

She got kind of annoyed with me when I corrected her and again when she asked, "How long have you been on Benlysta?" I told her, "Probably 8-9 years off and on,"  to which she kind of fake laughed and said "Hmm... I don't think it's been out that long!" I told her, "Yes ma’am. I even have friends who were in the trial."

Both of these are teachable moments. I almost take it as my responsibility to educate people about these incorrect thoughts and feelings. Did I make it a big teachable moment at that time? No. I was too sick. But I definitely did what I felt up to. Making it a teaching moment wasn't in my cards for that day.

Lupus flares can be unpredictable

Sadly, lupus is not like a car, which tells you when you have low tire pressure or need an oil change. There isn't a dashboard that says, "Oh, at 7 a.m. the brain fog is gonna hit and make it hard to get ready. By 10 you're going to be exhausted. By 2, the day is just over." Sadly, I get up every morning taking a few steps, and pray that it will be an easy day. But again I don't have a dashboard telling me I got hit by a bus (flare). You get what I mean. I wish we did have some kind of dashboard. But sadly each day is a guessing game.

Lupus and other rheumatic conditions, as well as autoimmune conditions, are not taught much. At least in my area. Those conditions aren't the subject matter they focus on in medical school. I remember nursing school clearly that we spent about 10 minutes in a lecture about all autoimmune conditions. Then, they brought in a panel of older people, meaning no offense to anyone of that age. At that time, that age was a big demographic for lupus. We know now that it has changed. My sister and I graduated from the same nursing school 15 years apart. We both had the same experience. She said, "I should have just gotten up there and taught the class. Because the lecture they gave just isn't it!"

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