The Story around the origins of my Psoriatic Arthritis

This is part 2 of the narrative of my disease development from childhood, through motherhood, middle age, and menopause. I’ve created a bulleted a list of the disease progression and a family tree of the generations of disease in my family.

Motherhood & Faith

My twins were 8 and my youngest was 2 when I stopped getting paid for my time. I turned my focus to full-time parenting, but as most women do when they “retire”, I took on volunteer work with a vengeance. Without much forethought, I focused all my energy on my church. I grew up singing, playing the organ and even cleaning our church. It was a natural first focus. Our church was vibrant and alive with relevant bible studies and a large circle of people with kids the same age, so we easily bonded over our shared experiences.

My faith was what gave me the strength to give up my career and focus on my family. It was only through my faith that I was able to find peace in that transition. There was a clarity of purpose (although now I realize that was not in my best interest, but it was in the best interest of my husband, our children, and our society in general—that isn’t just another blog post but another blog entirely).

It brought me tremendous joy to be with my family in church on a Sunday. My kids were soaking up lessons on Jesus and love.

What could possibly be wrong with this picture?

Getting involved in the leadership and politics of a church!

I grew up Catholic, but we were now Episcopalian. Little did I know that there were those who considered a convert like me to be less than qualified to be in a leadership role. There were so many opinions about the music, the way the service flows, whether the sermon was good enough, whether the rector was taking too much personal time, the incompetence of the church staff. In Catholicism my personal opinions were irrelevant. Things were passed down from a higher authority. Episcopalians are more democratic and trying to serve a church can be construed as a power grab. Offering to be helpful when someone was out for surgery was seen as trying to take over their position. This is just a small piece of the story, but it is the context for the development of some early symptoms.

I developed a muscle twitch in my eye. At first, it would come and go, but then it stayed, not just for a week but for months and years. A friend from Germany suggested I was low in magnesium so I started taking magnesium supplements. When the twitch would get really bad I’d take 2 or 3 pills at once. I didn’t know it at the time, but the magnesium was exacerbating another symptom (diarrhea). I would sit in meetings and hold my hand to my face to try to stop the twitch. It was exhausting. Nights were the worst because I loved to read and could no longer read without using one hand to hold my eye muscles still. Most people didn’t notice it. But it was constant and more than I could bear.

Patriarchy: The evolution of an independent woman to a powerless wife

A relevant part of my story is how my spouse responded. He thought it was just stress & wanted me to quit my involvement in volunteer work. I didn’t see my life as MORE stressful than when I worked. And the reality is that it wasn’t more stressful. I had far more time in the evenings to do whatever I pleased. But I did have less support, acknowledgment, and respect. When I stopped working I lost my salary and co-workers that reinforced my contribution. Now I had no money, no performance reviews, no promotions and a partner who did not find my contributions valuable.

I could never have articulated it at the time, but my husband & I made a lousy parenting partnership. Even though we’d made the decision for me to stay home, he resisted my attempts to create systems & run our home in an orderly fashion. I don’t think he realized what he was doing. It was just the normal power struggle of marriage & we’d both been raised in patriarchal homes, so he expected to be in charge at all times & I thought he should be in charge at all times. He was mostly passive-aggressive in his approach, but it did cause me significant anguish.

Like most men of his generation, he was uncomfortable with his emotions & in that discomfort would look for blame. His discomfort with my leadership in our home and social world, & his tendency to look for blame made it difficult for us to connect emotionally. A pattern developed of keeping to myself, which made for a very stressful environment and I began drinking heavily in the evenings as an escape.

I guess I was living with more stress, not necessarily because of the things I was DOING but because of my environment.

Psoriasis

The psoriasis diagnosis was devastating for my age. I was only in my early 40s and had been healthier than the average person my entire life. To be told that I had a condition that was not fixable, but that I would have to live with for the rest of my life was somewhat devastating. The psoriasis was not in an area that was visible to the public, which I guess could be seen as a blessing, but it was quite painful. In the beginning, I used all the topical ointments the doctors prescribed, cycling through many different versions over the years until I realized it was thinning my skin and making my condition worse. That’s when I realized I needed to find a more natural solution.

This was a long narrative to get to one key point. Stress was part of the story about the onset of my disease, but it came from my marriage, home life, volunteer work & my poor handling of all of those situations. My marriage and home life have not changed. My husband hasn’t changed, but I HAVE changed how I respond. I took responsibility for things that were not my responsibility. As a woman, I thought I should be able to make everyone happy while running the home like a well-oiled machine and providing for everyone’s needs. It was an impossible expectation of myself and gave others power over me. If my husband wasn’t happy, it was my fault. I had no personal control and took no personal responsibility.