Addison’s disease: two years post-diagnosis

This time two years ago, I was in the harsh throes of undiagnosed, untreated Addison’s disease. I find it difficult to write about personal stress in my life, and Addison’s disease has stress as its epicenter. I find it even more difficult to write about my own church as a source of stress, but all relationships in one way or another come with stress, and a church presents a lot of relationships. These difficulties notwithstanding, I hope my account might be useful — validating, vindicating, or encouraging — for other people with Addison’s who have experienced, for whatever reasons in their own lives, overwhelming stress. The point is, each person must manage his stress where he encounters it.

Many people experience “anniversary stress” around the same time that a very stressful event occurred in a previous year. I suppose right now I’m experiencing anniversary stress over events and sensations that I experienced in the months before and following my diagnosis.

Two years ago, the normal stresses and buffeting of ordinary tasks and interactions with others seemed life threatening — and they were, without sufficient cortisol to mitigate the adrenaline my system produced in response to the stressors. If you don’t have Addison’s disease, I don’t think I can sufficiently explain the experience, but I would hope to increase your understanding if you have an Addisonian in your life.

Memories of the time immediately preceding my diagnosis recall the anxiety, resentment, foreboding, and physical symptoms that made every day terribly stressful. I stood outside on a sunny 75° August day, gripped with a chill that made my chest ache. I hyperventilated when I attempted to say good morning. I became faint walking the length of my hallway to my laundry room. I slept during the day for the first time in my life, and began vaguely to wonder whether I would simply come soon to the end of any waking time at all.

Friends persisted in inquiring when I missed church, offered help I did not want — and I snapped at them. My life purpose was reduced to one commitment: All I required of myself was to show up in my living room each day, dressed and in my right mind, and the latter part was negotiable. My husband required no more of me than I required of myself. In my fear-darkened heart, I cut off everyone else except my Cat who made any demands of me at all. I perceived my friends as useless at best, or, at worst, stressful and thus harmful to me. Each day brought a sense that rape, pillage, famine, and war were in the air, except that my favorite descriptor of the four characteristics of Western civilization no longer seemed funny.

People with Addison’s disease need strategies to avoid situations, people, and things that stress them. It doesn’t matter what the rest of the population objectively thinks should or should not stress them. I am by temperament anxious and sensitive. In my experience, endocrinologists know very little about Addison’s patients except that hydrocortisone will keep us alive. It will manage the disease as they say, but I believe that management is code for maintaining the Addisonian as if he were a normal person under normal stress. If that isn’t who you are, Addison’s disease might heighten who you are, making you more susceptible to frustration, stress, anxiety, and sensitivity, because you simply don’t have sufficient cortisol to mitigate the adrenaline that responds to daily life as you experience it. I have always been claustrophobic and nervous in crowds, for instance, but for the past two years, it’s been daunting for me to stand in the restroom line at church. The fact that my legs often ache doesn’t help either. I accommodate myself and head downstairs during the service when no one else is there.

Addison’s disease is chronic adrenal failure. There isn’t a cure. It doesn’t get better. It gets managed. Management levels are not always satisfactory.

It is difficult to explain how noisome it can be for someone without strength or energy to be constantly asked how he is feeling. I recall many instances when friends from my church, whom I called, in my wicked heart, the pew police, would enumerate my absences and emphasize how much I was missed. How I wished for them to reassign themselves to another beat! I assigned them to my blog, where I chronicled what I could about what I was going through, so that I would not have to respond to them individually. Regrettably, my blog became for some a sort of baby monitor. Why am I so sensitive to these sorts of things? The friends who inquired after me are caring women. Their well-meaning solicitousness is a common dynamic among women. I’m simply a woman who is not at home with it.

My examples of stressful situations are taken from my church only because I have almost no other contexts of expectation or obligation, and those things tend to be the sources of stress in my life. I have largely withdrawn from keeping up with politics and current events. Our household is solvent. We socialize very little, I don’t work outside my home, and I tend to avoid gathering with more than one or two friends at a time. About the only time I am ever around as many people as I am in church is when I am in a restaurant — and there I am invariably happy and unstressed. A close-knit church has its advantages and its stresses. Sometimes simply bypassing a usual routine and doing something else relieves accumulated stress. Visiting a different church can make all the difference. It’s all part of management.