When Should We Tell Our Loved Ones We Are Unwell? ‘The Wolf at my Door’ Series

{For the beginning of this series, click HERE}

When should we tell our loved ones we are unwell? What is the balance between transparency, and ‘not making them worry’? In the past few weeks, I’ve had moments of reprieve from the lupus crash that ensued in early March. The wolf at my door wandered away for a spell (lupus = wolf, in Latin). But she quickly came back. During the reprieves, I allowed myself to schedule some outings—with my daughter or to a couple of family gatherings. Each time, I prepared with days of serious rest (little time spent out of bed), loaded up with anti-inflammatories, and while at the gatherings, put my best face forward, not letting on that I was unwell. In part not to detract from the joy of the event; in part to not ‘holler wolf’ (there’s that word again) unless I am worse off—in case I really need help down the line.

But when I spent prolonged one-on-one time with my daughter, I could not hide. She knows me too well and could see the difficultly I had standing up or walking up and down stairs because of severe joint point, the amount of rest I required. She was concerned, but I allowed us to laugh it off, making our macabre jokes. When we send notes throughout the week, I never mention that I feel lousy, though often I do.

What is this need we have to keep to ourselves the fact that we are suffering? In former times, when people lived in close quarters and in community, there was no such hiding. People knew when others in their family group or community struggled physically and mentally. I wonder what it says about our individualistic society that we are compelled to keep such frailties secret. I’ve often heard ailing persons described as “brave” or “never complaining” for keeping their unwellness secret, as if this is a virtue.

Sharing vulnerabilities brings us closer

When should we tell our loved ones we are unwell?

From my husband, I cannot hide. He observes the lumbering movements, the wincing, the shrinking of my world to the walls around my bed, the inability to devote energy to my passions to the extent I once did (art, gardening, walking in nature). This sharing of reality only makes us closer (I reciprocate by being eyes-open aware of what’s going on with him, physically and otherwise). So why do I deprive my other relationships of this closeness? I have notions that I’m guarding my daughter from worry. Or that I’m not burdening my family by placing more concerns on their already full plates. I have felt myself pull away from some friendships not only because of limited energy, but because I’m avoiding the question, “How are you?” In a few cases, I worry about incredulousness, that someone might think I’m exaggerating. But my family members have been eminently compassionate when I mention I’m unwell. So why the “brave face”?

Last night I mentioned to my husband that I’ve been in this lupus crash for two months. “What if I don’t get better?” I asked. I didn’t expect an answer, and received from him the predictable reassurance that I will get well in good time. But the question was more a release of worry building up in my own heart. The question “What if I don’t get better?” creeps in sometimes. I offer myself reassurance that even if my body does not improve, I will be okay. There are still many things I can do. Many things I love. Even if I can manage only a quarter of what I did before, and what I used to accomplish in a week now takes a month, I do accomplish things. I will work at something for a short spell (most recently, hand-built pottery) until the hurt, exhaustion, and general malaise are too unbearable. Then I rest.

I know this: when my loved ones share with me how they are doing, how they are struggling, it feels like a privilege. That they offered me an unvarnished glimpse into their reality is appreciated. Maybe this is why I should do the same. Sharing these hard truths with one another helps us flex our humility, our honesty. And it allows others to flex and express compassion.

{Roughly 52% of Americans live with chronic illness. If you know someone who might benefit from this series, please share.}

Wren, winner of a 2022 Independent Publisher Awards Bronze Medal