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.”
I think think many people´s eyes “glaze over” not with disinterest, but because they are so very terrified of confronting this fact of life – that anyone can get chronically ill… They push away this thought in panic and simply can´t bear to even contemplate it. So they (unconsciously) avoid that person, which is tragic, because then the affected person feels even lonelier, and may even start feeling unloved.
Some people are also at a loss what to say, and then feel embarassed about that, and that also results in avoiding the person. They feel guilty, and so they push away their guilty feelings by not “finding time” to connect.
I suspect some people also feel guilty about being healthy, while their friend is suffering. Guilt is a terrible killer of relationships… They also don´t know what to talk about, because they worry that some of their activities, like sport, walking, travelling, etc may make their friend feel unhappy to hear about.
Of course, there are also those people who have not been blessed with the gift of sympathy and compassion, who don´t know how to put themselves in other people´s shoes, and so they have really absolutely no idea how you are feeling, and they have never learned to listen.
But there are also those people who really don´t care and are selfcentered and only care about their own wellbeing, but I think they are in the minority.
I had never thought of the fact that some are “terrified of confronting” chronic illness, that they “panic” about even thinking about it. I will work on being more sensitive to such fears and open my heart to receiving their fears. It’s all about relationships. True relationships only survive through vulnerability and it’s a two-way streak for sure! These options you presented have really opened my eyes. Thank you for blessing me today!
Sheila, I marvel at your willingness and ability to so eloquently share your pain, the ups and downs of ever-evolving diagnoses, and your vulnerability and soul searching, while at the same time imparting truth and hope through beautifully-crafted sentences, poignant phrasing, and spot-on scripture references. Thank you.
These words make my heart full. Thanks you!