4 Ways My Rare, Chronic Illness Has Shaped Who I Am as a Parent

My wife and I have been married for almost 26 years, and we have three children we are very proud of. The oldest is majoring in math and statistics, and she has an internship through the National Science Foundation. Our second daughter is about to begin her freshman year in college majoring in music performance. Our son will start his senior year in high school. He is involved in theater and intends to pursue social work.

Like all families, we have our challenges. One is my rare disease.

I live with erythromelalgia (EM). This disorder affects my neurological, vascular, and dermatological systems and causes relentless burning, redness, and swelling in my feet, legs, hands and ears.

My children are exceptionally understanding about all of this. On Father’s Day, though, I recognized how much this dreadful illness has shaped the way I understand myself as a father.

1. My chronic illness affects the way I perceive my appearance.

Since receiving my diagnosis, I have retired from teaching to receive disability “benefits.” Now my daily wardrobe choice involves which pajamas to wear. I spend 20 or more hours every day with my legs up because walking and even sitting triggers flares. Showering causes intense pain, so I limit that to about every other day. And I shave about a couple times each month.

Sometimes when I look in the mirror, I wonder who that guy is. Another facet of EM swipes away my fatherhood self-image. Because I grapple with painsomnia, I sleep on the living room couch most nights. When my kids go to bed, they see me on the couch. In the morning, they see me lying there, and I am still there in my pajamas when they get home.

I feel embarrassed by my appearance. I want my children to see me as someone who is strong, dynamic and active. But I can only offer an unshorn couch potato in his pajamas. Yes, chronic illness has conjured up body image issues in a middle-aged man.

Whether you call it ego, pride or hubris, a burning sense of shame outpaces the neurological burning in my legs. Maybe I harbor old-fashioned beliefs related to what a father should do and be. Perhaps I need to follow my middle daughter’s advice and “smash the patriarchy.” And I would, except my body hurts too much to move.

2. My chronic illness affects the way I perceive vocation.

As a father, not having a job is emotionally painful. Working provided me with a sense of purpose, meaning and accomplishment. Even when I have been unemployed, I felt that I was at least trying to work.

However, now that I am permanently disabled, I have nothing to do. No schedule, agenda, or goals to accomplish. I have tutored a little bit online, and I write as I am able. But EM will not allow me to commit to a fixed timetable, and that makes holding down a job difficult.

My son has a minimum wage job. If he worked all year at that rate, he would earn almost as much as my annual disability payments.

How does that affect my sense of fatherhood? I feel like a blob who does nothing but lay around all day.

My kids have assured me that they understand my plight, and they have never said or done anything to suggest otherwise. Yet I still feel that I am not fulfilling my role as a functioning father. This is not their issue; it is mine.

3. My chronic illness affects the way I have fun with my family.

I have not been able to spend down time with my family as I would like. My oldest daughter’s college is a two-hour drive away, and I simply cannot be in a vehicle for that long and then visit. She is gracious and understands. We text nearly every day and talk often, but I miss not seeing her.

Meanwhile, EM has caused me to miss school events like concerts, plays and award ceremonies. I have been able to see photos, recordings, and even live-stream the events, but that does not feel the same as being there.

We play some video and board games together, but there is no more basketball, racquetball, or working out at the Y. I insist that my family goes on some day trips to get out of the house and have fun together.

My absence carries with it a sense of guilt and loss. Dads should have fun with their families, but EM has changed the way I enjoy time with my family. If I had known this disease would overtake me, I would have relished each family hike, vacation and walk to the park.

4. My chronic illness affects the way I contribute around the house.

EM has changed my ability to work around the house. I perform household chores as I can, but I am unable to stand long enough to sweep floors, wash the dishes, or do the laundry with any kind of regularity. I feel too weak to do yard work, and on most days the burning in my body is too great to cook.

One of my favorite “dad chores” was shoveling snow. This can be physically demanding, but I love the meditative aspect. My son has taken it over, but I am not sure he has discovered the Zen of snow shoveling quite yet. Maybe he never will, and I have to be all right with that.

In addition to the kids doing almost all of the physical jobs around the house, they take care of me. They perform simple jobs like filling my water bottle, and using shopping apps to order the groceries.

All of this points to the fact that my role as a father has changed. Instead of “doing for” others, I have had to learn how to submit myself to letting others “do for” me.

My daily experiences with EM have served as lessons in letting go: letting go of my health and my ideas of what it means to be a father.

Being a dad is not about fitting any stereotypical image or doing “dad work.” 

Instead, fatherhood is about love.

EM is teaching me new ways of loving my children, and I am sure they are discovering new ways of loving me. I am blessed to have such successful and supportive children who accept me as I am with my chronic illness.

In this way, my chronic illness has given as much (or more) than it has taken away.