Journey to Diagnosis
I was sick a lot when I was a kid, much more often than my friends or siblings, but I didn’t really look sick. I did the things that most kids do, except when I got knocked down by an infection of one kind or another, usually bronchitis or pneumonia. My health took a nosedive after the birth of my second child. I had a complicated pregnancy. I went into preterm labor at twenty-eight weeks, was hospitalized for a week, and was put on bedrest until week thirty-six. My daughter was born the day after my doctor told me I could get out of bed. After her birth, I had unexplained weight loss, black circles under my eyes, debilitating exhaustion, worsening asthma, and bouts of extreme stomach and gastrointestinal distress, only to be told by a parade of doctors that my tests were normal and that all working mothers were tired. Several patted me on the hand and offered me antidepressants.
Things got even scarier when I began to have spells of weakness so profound that I felt as if my bones had been replaced with lead. I had conversations with myself, like, “Lift your left arm. Come on; you can do it.” I remember a time when my husband, James, helped me to bed because I was too weak to get there on my own. It sounded as if he was talking to me through a long tunnel. “Are you okay?” he asked. I couldn’t answer. My body had taken my mind prisoner. I could think, “No, I’m not okay. Please do something!” but I couldn’t make my mouth form the words. I slept through that night and dragged myself out of bed the following day. The same scenario repeated itself several times. James went with me to many appointments, but we got no answers. One doctor took him aside and told him that he had to face the possibility that I was mentally unstable. He wondered how he would care for our two young daughters and a disturbed wife. For a while, he actually believed that my symptoms were all in my head. I also began to doubt my grip on reality.
It wasn’t until I had several severe asthma attacks that my asthma/allergy doctor decided to dig a little deeper. I was sitting in his waiting room reading an out-of-date copy of Time Magazine about President John F. Kennedy’s health. It turns out that that article and Dr. B. Steele Rolston saved my life. I recognized some of my symptoms in the piece and asked Dr. Rolston if I could have Addison’s Disease like Kennedy. He took me seriously and said, “It’s possible. Let’s find out.” I had blood draw the next day. My doctor was so stunned by the results that he called me and said I had to see an endocrinologist immediately. He told me he couldn’t understand how I was functioning with cortisol levels that low. Cortisol is the body’s primary stress hormone necessary to sustain life. It manages how the body uses carbohydrates, fats, and proteins, keeps inflammation down, regulates blood pressure, increases blood sugar, controls the sleep/wake cycle, boosts energy so you can handle stress, and restores balance afterward. It turns out that my adrenal glands, which produce cortisol, were failing; if I hadn’t gotten treatment, I could have died.
Finding an endocrinologist to take my case proved difficult. There are very few, and it takes forever to get an appointment. My mom called a friend who was on the faculty of our state university medical school and asked for his help. He asked the head of the endocrinology department to take a look at me. I knew I was in trouble the minute he walked into the room. He sat next to me, patted my hand, and said, “Now, what makes you think you have some rare endocrine condition?” I should have said, “What makes you think I don’t? Is Dr. Rolston an idiot? Have you seen my bloodwork?” I was so stunned, furious, and disheartened that I didn’t say anything. I thought I would finally get a diagnosis and the treatment I needed. Instead, I let him tell me that all my problems were due to the steroids I took for my asthma, even though I hadn’t had any in six months. When I look back now, it was evident by the look on her face, that the resident in the room with us was uncomfortable with his diagnosis.
I told Dr. Rolston what happened. He didn’t miss a beat and said, “We need to get you to someone else. This is a dangerous situation.” He made phone calls to all of the endocrinologists within 100 miles and got me an appointment in a nearby city. That doctor ran more tests and confirmed what Dr. Rolston suspected. I had Addison’s disease and would need to take replacement corticosteroids for the rest of my life and carry emergency injections in case of sudden symptoms that could bring on an Addisonian crisis.
A jumble of emotions flooded my mind, and tears streamed down my face. At least I knew I didn’t imagine things, but I had to figure out how to live with this rare condition on my own. No one, including my doctors, knew enough people with the disease to tell me what to expect from living with Addison’s Disease. I had to learn to navigate the day-to-day on my own. There was no discussion about the emotions that come with chronic illness, the side effects of my medications, what types of diet and exercise might help my condition, how to coordinate my care with my other doctors, or when and how to contact my health care providers.
Unfortunately, my health journey didn’t end there. I was alive, but I continued to feel sick and exhausted, along with myriad of other health problems that cropped up. My experience told me to trust my gut and find a doctor who would listen. Two endocrinologists and ten years later, I was diagnosed with a rare autoimmune disease – autoimmune polyglandular syndrome type 2 that causes the body to attack and destroy multiple glands – adrenals, thyroid, ovaries, and the cells in the pancreas that make insulin. Only one in fourteen million people have this unusual disease. In addition, a few years later, in my late forties, I was diagnosed with an aggressive form of psoriatic arthritis that affects my joints and spine, as well as Sjogren’s syndrome, mainly involving my eyes. Unfortunately, once you have one chronic condition, especially an autoimmune disease, you are more likely to develop more than one chronic condition. This is known in the medical world as Multiple Chronic Conditions or MCC.
It often takes years to get a correct diagnosis if yours is not a common condition and sometimes even if it is. It’s important to address the emotions that come with being misunderstood, dismissed, or invalidated, not to mention all the physical issues that come with your disease. In addition, you might not be able to work or do things you love to do. That stored stress and emotional logjam can make your health worse. I have worked through a lot of this with the help of talk therapy, meditation, and a type of therapy called EMDR(Eye Movement Desensitization and Reprocessing). Find what works for you and don’t give up. Watch this inspirational video about one person’s journey from diagnosis to living with a chronic disease.
