With chronic disease, the one inflicted begins in the dark, fumbling through protracted bouts of insomnia, depression, and pain until finally a lab comes back or an endless infection is abated before a diagnosis is pronounced. Only after a faltering diagnosis does a vague clarity or validation dawn.

Waiting on labs, what a trial in itself! I long for an understanding of why this peculiar sense of disappointment can feel so crushing. I bumble through all the new normals that lab results dictate. I want to share my discomfort, but very few want to hear about the odd guilt-ridden grief that comes with a diagnosis. What did I do or not do to bring this on? There is rarely freedom to talk. And when I do, people’s eyes glaze over. I can count on one hand those who do not react with disinterest.

After each diagnosis, for they are unending with lupus, I addictively research and read about what it’s like living with a specific condition. Peer reviewed articles in medical journals are sadly devoid of the yearning sadness I am feeling. I crave specific answers, but instead I get vague, fluctuating impressions. Oh, and there are always the well meaning comments that drive me crazy. “But you don’t look sick,” or, “you’re strong, you’ll manage!”

Pervasive Western culture’s eagerness to resolve the suffering of a chronic disease is in fast forward long before any of us have processed what we lost.

Some days are good, and some not so good. Thank you for your patience in allowing me the privilege to articulate what is so hard to do.

How are you serving that special friend or relative who is floundering in a new diagnosis?

She had endured a great deal under the care of many doctors and had spent all that she had. Yet, instead of getting better, she grew worse. When she heard about Jesus, she came behind him in the crowd and touched his cloak, for she kept saying, “if only I touch his clothes, I will be healed.”

Mark 5:26-28

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