I have Lupus. How not to piss me off. A tutorial.

If you couldn’t guess by the title, I have Lupus. Granted its pretty mild, compared to others. If I we met and spent time together, you wouldn’t be able to tell at first glance that I am not as healthy as I look. Trust me, that is just fine with me.

BUT…

BUT- if I do disclose to you that I have this disease, please, please do not offer me your favorite home remedy (I already drink enough tea to drown a horse.) or ask me if I’ve really been diagnosed or if I “just think” I have it because I don’t look sick enough. Also don’t tell me what medications I should be taking because someone you know took it, and responded well. Chances are I have either already tried whatever medication you are suggesting or I can’t try it because of other medical interactions or side effects.

In short- unless you are one of my doctors: you don’t know what works for me, what doesn’t work for me and what I’ve already tried.

Even though this disease is on the mild side that doesn’t mean it doesn’t affect me. Chronic pain, Chronic Fatigue. Increased chance of infection. Increased healing time after injury or illness to name a few.

Let me just say this: I am usually really open with people about this condition. Everyone I work with knows I have it but I don’t broadcast it. If it comes up in conversation- then I let it. I have an open discussion about it. The majority of people are super respectful and genuinely curious, but I had an experience the other day where a coworker and I were chatting and the topic came up. I mentioned that I get sick more often because I have lupus. She responded by asking me if I’ve actually been diagnosed or if I just Googled my symptoms and that’s what I think I have.

I paused for a beat, dumbfounded at the disrespect, I icily replied “No I was diagnosed 7–8 years ago by multiple doctors and a lot of blood work.”

Undeterred, she told me that her daughter had lupus years ago and took magnesium supplements and was cured. Therefore I should take magnesium or maybe I just enjoy the tragedy of having lupus.

Fuming, I replied that I also have a condition called hypoparenthyriodism. Its a condition where the body cannot regulate blood calcium, magnesium or phosphorus levels. The calcium levels are too low and the magnesium and phosphorus levels are too high. therefore I can’t take magnesium supplements or else it will push them higher. But I do have to take 8 calcium pills everyday. Its a lot. Somewhere in the ballpark of 4,800 mgs.

She responded by saying magnesium is what makes calcium work so if I took that I wouldn’t need to take as much calcium per day. I reiterated that I literally cannot take anymore magnesium because my levels are already too high. and there is magnesium in calcium supplements as well.

She made an audible sigh and rolled her eyes at me. I tried to let it roll off my back but its been bothering me.

This woman is not a doctor. Even if she was- she’s not my doctor- nor was I asking for her advice.

In short- Just be respectful. Everyone is fighting a battle you know nothing about. Lets try kindness first and see how far that can carry us.

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