Too Tired to Care

Recovery from the wounds of personal care fatigue

by Shane Stanford

I was sixteen. My mother was keeping something from me, and I didn’t know what it was. She did what parents often do—get all the facts, understand the big picture and seek the right moment for conversation. The difference was this conversation had the potential to shred the future.

I knew from her face that something was wrong, but I had hemophilia, a genetic and life-threatening disorder of the blood, so hospital visits and tests and complications punctuated my childhood at regular intervals. My mother routinely had reason for concern. I was in the hospital this time for eye surgery.

My eye got better. I went to school and church in my small town in Mississippi. I made friends. I played golf. I had a girlfriend, Pokey. Ten months after that confusing look on my mother’s face, the day came for my doctor to tell me what had put it there. When I had eye surgery, I’d tested positive for HIV. This was before donated blood was routinely screened for the virus. I’d likely been infected years earlier during a transfusion to treat my hemophilia. The test at the time of my eye surgery only revealed what silently lurked without symptoms.

I wanted to know how much longer I had to live.

Three or four years.

Had my future been shut down with one blood test?

My mother wanted me to know because she was concerned I would become intimate with Pokey and put her at risk as well. I had to tell Pokey. As young as we were, we’d already been talking about marrying someday, and we still wanted to. We moved on with planning a life. We graduated from high school and enrolled in college. My immune system continued to decline, and we knew we’d have to be very careful, but we got married while we were still in college. We might not have “someday.”

I was HIV-positive; therefore I was guilty of some dark disorder.

Judged for My Disease

After college, I enrolled in seminary at Duke University in North Carolina and worked for a church because I needed health benefits. Without the treatments they covered, my life would be at greater risk than it already was. I didn’t always have specialists to guide me through treatments, but I took care of myself the best I knew how. After seminary, I served several churches as a pastor. Because I had to disclose my HIV status to the ordination board, congregations I was assigned to serve knew of my health conditions. For most people who are HIV-positive, this is private information, and in the first few years after I found out, I could choose whom to tell. Now whole congregations knew. Some were places of affirmation and acceptance, but the specters of prejudice and ignorance were always just around the corner.

Then I was assigned to a large congregation in Florida.

On the surface the church looked like a progressive congregation, but I soon learned its history involved one struggle after another. I became the latest struggle. A faction was antagonistic toward me because they believed every person who was HIV-positive had done something to deserve being sick. I was HIV-positive; therefore I was guilty of some dark disorder.

On the Saturday before my first sermon—before these people even knew me—someone slashed all the tires of my car. Just to be sure, they also slashed the tires of my mother-in-law’s car and my parents’ car. A few days later, someone urinated on the sofa in my office, destroyed my computer, and defecated on the walls. I started getting hate mail.

This was the church’s response to my illness.

This went on for two-and-a-half years. I lived with uncertainty about whether my work there would make a difference, whether it was a place where my family could thrive, whether I could face one more judgment about the kind of person I was based on the kind of disease I had, whether I could just make it through the day and get home to my wife and daughters. What was I doing in a place where I got beaten up nearly every day? I was in survival mode in Florida, a constant state of “fight or flight.”

And it got to me.

I’d been a much better patient for most of my life. Florida changed that. Instead of being proactive about managing my own care, I didn’t have the energy, physically or spiritually, and I let things go. I ignored warning signals, like pain in my ankle where it was bleeding or the increase in my blood pressure. For a long time I didn’t realize how much the stress of my position in Florida affected me, or that I was so tired of the level of vigilance my health conditions required that I had checked out of the process.

People who live with chronic illness can see the world as a dark place or with optimism. I had always chosen to be optimistic, but Florida shattered that. Taking care of myself physically seemed like too much on top of everything else. It became the thing I would do if I ever had time or energy—which was never, in those days. Rather than being the pilot of my own care ship because I had the tools and knowledge to know what to do, I waited for a crisis to happen. Then I would deal with it. Every Sunday in Florida I preached my heart out, never hearing anything to tell me that my words were sinking in.

When I moved to Memphis, a physician in my new congregation introduced me to Dr. Scott Morris at Church Health in the belief that he could set me up with the doctors I needed for my complex health conditions, and we began a friendship. One night we went to a football game together at the Liberty Bowl. We’d been invited to sit in a box, which Scott had never done in that venue, and we walked around and around the concourse looking for the access we needed. On about the third trip around, my limp was obvious. Scott knew that meant I was bleeding into my ankle because of my hemophilia. I downplayed what was happening. In my experience, bleeding into my ankle was common. For that day, I just wanted to watch football with my family and new friends. Because of extreme stress in the years in Florida, I wasn’t taking care of myself the way I should have. I was weary of managing every little symptom, or even the big ones. I was jaded with going to doctors, who sometimes didn’t want to touch me. I had a clear case of care-fatigue, even though I had a lot at risk. The stress of that season is the primary reason I arrived in Memphis so fatigued at trying to take care of myself that a crisis was imminent. For two-and-a-half years I’d settled every day for a slightly lower level of health than the day before, not for lack of information about my diseases but because keeping up constant care, even for yourself, becomes one more exhausting thing to do when all you want is to enjoy the football game.

Scott saw through all that and realized I needed more than referrals to new doctors. I needed to get a complicated list of problems back under control or I was headed for a train wreck. Ultimately I went to the Mayo Clinic for an aggressive reset on disease control and my own care management.

Faith Fills the Gap

Also after I got to Memphis I overheard something one of my daughters said to her friend. The other girl was fussing about stuff her father wouldn’t let her do. I suppose it was the usual father-daughter friction over independence and make-up and clothing and age-appropriate activities. I’m sure I’ve given my daughter enough boundaries that she could have engaged in pre-adolescent whining about unreasonable parents.

Instead, I heard her say, “I worry every day that my dad might not be here.”

Every day.

My daughter has legitimate reason for the uncertainty. She knows my health issues are complex and serious, and that I have to think about them every day. She also knows I haven’t always done that as well as I should. We are a family, and what affects me affects all of us. My wife and daughters live with my health status right along with me. As a father, though, I want to help my daughters see past the risks, including the risk that I might not be here, to a life secure in the belief that they will be all right. I want them to know that whatever happens, they have the capacity to live in fullness and exuberance, with anticipation and aspiration.

The Bible’s message is God saying to us, “Do not be afraid, for I am with you.”

Our blood contains factors that work together to provide two essential functions in the event of an injury. First the factors, which are switched on in a specific sequence, cause the blood to clot. Then they help the wound heal. If you are missing just one factor, as people with hemophilia are, the process is disrupted. Replacing Factor VIII all my life has helped me understand that faith is a replacement factor essential to healing the wounds in our lives and communities, even the wound of care fatigue. Faith fills in the gap where we are missing something we cannot generate on our own. As we do life together, whether the challenge is big or small, faith helps us fit better into how we respond to each other’s needs.

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