"Ultimately, it didn’t matter what we called my disease. What mattered was learning to live with it.""Like most things in life, illness doesn’t exist in black and white, but in the million shades between."Since January 2014, I’ve seen over 50 doctors and undergone countless tests ranging from simple blood draws to spending five hours in a sweat chamber covered in purple powder.
If you tell someone you’re sick, they want to know what you’re sick with. The diagnosis informs their behavior. Should they be worried? If so, how worried? Are you contagious? Is it fatal? Is it something that could happen to them too? And people are naturally curious. Few things pique our interest more than guarded, mysterious language. If someone says, “I have a cold,” we say, “Oh that’s too bad. Drink lots of fluids and feel better soon!” and then we move on.
If I listed all my symptoms, I would seem like I was complaining. If I boiled it down to one symptom, like migraines or fatigue, I would be underselling the severity and setting false expectations about how well I was. But people usually want to know what’s wrong, and how can you fix it, and are you better now? The narrative of illness that we embrace in our culture leaves little room for chronicity. We think of illness as a battle to be won or lost, with disease something you fight until you achieve victory, or die trying. We treat illness like war, and naming the disease is the equivalent of meeting the maxim: “Know thy enemy as you know thyself.
We struggle to embrace chronic narratives because they’re scary and uncomfortable. There’s something fundamentally disturbing about the notion that, even with all the best doctors, even if you do everything right, even if you exercise and eat organic and take your vitamins, even then, pain and illness could still be your daily companion. It’s uncomfortable to sit with the knowledge of unending suffering.
Might be lupus!