What I’ve lost to lupus: a partial inventory

Chronic illnesses take so much from those who live with them. For me, the experience of adapting to life with incurable autoimmune disease has often been one of grief. (While some losses have truly been gifts, that is a topic for a different post.) This list includes several of the significant losses that I carry with me and run into over and over again.

  • A sense of trust in my body
    I used to have confidence in my body. I used to think my body could do almost anything I wanted it to. (Except run. My body has never been able to run for more than 6 seconds in a row. I’d accepted this by age 12 and never looked back.) If I needed to deny my body’s basic needs for sleep, food, water, and so on, I could do that for a limited period of time without significant consequences. I could rely on my body to be there for me. I could trust that, except in unusual circumstances, my body would be healthy and do what I needed it to do.That is not the case anymore. Just a couple of weeks ago, I developed a pain in my knee so severe I could not walk. There was no discernible cause for this—one minute I could move about freely, and the next I had a stabbing pain that limited my mobility for several hours. While that particular intensity of pain is thankfully unusual for me, I develop aches and pains out of nowhere all the time. And there are physical effects beyond pain, too.

    I used to trust that my body would support me in my endeavors. Now my body is unpredictable, and I have to accommodate its needs rather than expecting it to accommodate mine.

  • The ability to eat cookies without fear of repercussion
    I have learned that sugar definitely triggers my symptoms, particularly joint pain. So it’s always a question of whether I want the cookie enough to not be able to walk comfortably the next day. (And yes, sometimes it’s worth it.)
  • Also ice cream
  • The seminary experience I wanted to have
    I was SO EXCITED to go to seminary. I’d been dreaming about it for years by the time I actually packed up my car and moved into my dorm room. I was always a good student and enjoyed school, so the thought of doing graduate studies in a niche field where everyone else was pumped to discuss the nuances of systematic theology—well, let’s just say I was There. For. That. But by the time I started, my disease was already a little active, and it only worsened during my 3 years of study. By the time I graduated, I couldn’t follow class discussions or assigned readings, and I couldn’t retain information for even a few seconds. I remember sitting in my IKEA armchair and reading the same paragraph over and over, unable to understand it and hold onto the information long enough to move to the next paragraph. I look back on my academic work from my senior year and honestly am saddened to recognize how much my lupus limited me. I wanted so badly to immerse myself in the intellectual depths of the Church through the ages, and by the end I was unable to even wade in the kiddie pool.I lost out on other experiences, too. Seminary is a uniquely formative experience, and I was lying in bed through much of my three years there. I skipped out on numerous events that I would have loved to participate in, and many that were required, because I simply did not have the energy to go to them, much less the ability to pay attention once I was there.

    This may be the thing that brings me the most grief. While in the end I realize that this three year window was the best possible time for me to get very sick—better than when I was teaching high school, or after I was in ministry—it still breaks my heart that this unrepeatable experience was in many ways lost to me.

  • My short-term memory
    When I’m flaring, it’s atrocious. If I ask you for your name 47 times, it’s not personal. It’s lupus.
  • Confidence that I could really do any job I want
    This is a hard thing. I always knew some jobs were never going to happen, the way anyone else does. But to realize that there are some things in my own field that are truly physically not possible for me—that is tough. I know, for example, that even though I love pastoral care, I can’t be a hospital chaplain and be on call periodically throughout the night. The disruption to my sleep schedule would cause my disease to become more active, ultimately causing organ damage. When considering my vocation, I have to take into account my body’s needs in a way I’d never anticipated.
  • The ability to be awake past 10:00
    There comes a point at which my body just totally shuts down. It is almost always before 10:00. Beth and I call this “pumpkining,” because I turn into a pumpkin and am useless from there on out.
  • My short-term memory
  • My vocabulary
    When I’m flaring I develop aphasia—the inability to recall words. You know that sensation when there’s a word in the back of your brain that just won’t come to your tongue? That’s what it’s like in basically every sentence. And it happens with really simple words that you’ve known since you were 4.
  • Sunlight
    UV light exposure makes lupus worse. I have to minimize my time outdoors, and I have to wear sunscreen and sun-protective gear anytime I’m going outdoors for even a few minutes. I was never a sun bather (because fair skin, red hair, and freckles), but now I can’t be outside at all without worrying that I’m making myself sick. I literally have nightmares in which I realize with horror that I’ve been outside for hours with no sunscreen. (I think my rheumatologist would be thrilled to know that his warnings have worked their way into my subconscious.)
  • The possibility of pregnancy.
    Honestly, I’ve never wanted to be pregnant, and it helps that I have a wife who very much does. But it’s still a strange thing to have it basically taken off the table. (I should say that lots of people with systemic lupus do have successful and healthy pregnancies, but usually only after their disease has been well-controlled for at least 6 months or longer. My disease is still active.)
  • A hell of a lot of time.
    Doctors’ appointments. Driving to doctors’ appointments. Infusions. More doctors’ appointments. Lying in bed unable to do much of anything except maybe watch some very uncomplicated TV. Phone calls with the specialty pharmacy. Trying to remember why I got up and came to this room. Phone calls with insurance. Mental operations that should have taken much less time. Phone calls with doctors’ offices. Waiting in line at the pharmacy. Waiting in doctors’ offices. Waiting for blood work. Waiting to feel better.

2 thoughts on “What I’ve lost to lupus: a partial inventory

  1. My birth mother had lupus. She was diagnosed in the early 1960s when a massive attack nearly killed her.
    Which would have left my young father with me, a less than 1 year old infant. Plus Mom had been an slight olive skinned sun bathing sun worshipper all her life. She was given 6 months to live.
    And she beat it.
    Gloriously, determinedly, beat that prognosis and lived.
    We lived around the lupus from then on. And she did it with a grace and dignity I scarce can comprehend now.
    And like you, her life was one of losses. Painful losses.
    I read this and see my mom again. She accomplished so many stunning things.
    But the losses were real.
    And they should be acknowledged.
    And you will always deal with people who won’t get it. Who don’t understand invisible illnesses. Who think just because you had 3 good days in a row, you should just tough out a run of bad ones because it obviously can’t be that bad, you were just doing this or the other…
    It doesn’t work that way.
    That betrayal by one’s own body. Oh yes. Yes.
    I’m so, so sorry. Anything I can do for you, I will. Prayers, yes.
    But I can be an ear to listen and a heart to love, if you ever need it.


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