The “In Between” of Living with Lupus
Sometimes I describe living with Lupus as being in an “in between”: not fully normal, but not different enough for others to notice. From the outside, everything looks fine—but I know it’s not. I know it because of what I feel, because of what my blood tests say. And sometimes I think: if there were a button to turn off the symptoms, I’d be just like anyone else.
Living in this “in between” means that some days I need help, and other days I don’t. It means there are days full of pain, and others where I can do it all—and even more. Some days I have endless energy, and other days I drag myself just to keep going. It’s breathing with ease one day, like my lungs were made to run marathons, and the next day struggling to take a few steps without deep breaths, laughs, or yawns.
It also means not wanting to limit myself, yet needing to be cautious. Dreaming of all the things I want to do, while recognizing that the “what if I can’t?” is always there. It’s living between the “I want to” and the “I should,” between desire and precaution.
It’s doubting myself sometimes, asking why I make certain choices. It’s accepting that I have some control, but not all of it. It’s living in constant uncertainty—knowing that things could change at any moment… or maybe not at all.
Sometimes my emotions take over more than my body does. A cold that lasts three days for someone else can last twelve for me. And still, I don’t want to stop going out or seeing the people I care about. I know that stress, sadness, or fear weigh heavier on me and can weaken my immune system. I know I can’t always avoid those feelings. And when my body breaks down, the guilt arrives: “If only I had been less stressed, less sad…”
Lupus and being immunocompromised means wanting to be normal—because I know it’s possible—but also knowing that at any moment, without warning, my body will remind me that I live in that “in between.”
It feels like being at sea. On the calm shore, I feel safe. But I never know when the big wave will come—the one I’ll have to learn to ride.
And yet, after the guilt, sadness, and uncertainty, what remains is pride. Pride in what I face and what I do, even knowing the “what ifs” are always there. Pride in not letting the “what ifs” stop me from the “wants.” Because if we only waited for the “what ifs,” we’d never pursue the things that fill our hearts.
And finally, what remains is the joy of perspective. Trusting that there is a reason, that there is a will and a way, and that somehow, everything eventually falls back into place.