Dear Doctors,
Once upon a time I was in your office. For some of you, it was during my childhood. And although I understand the clues were too subtle then (pudgy and pale and non-athletic, anemia, strange lymph node swellings, attacks of dizziness), I just wanted to remind you that I was there. Some of you saw me for just a single visit as many as three decades ago. And others saw me multiple times over the years. You are family general practitioners and internal medicine specialists and highly regarded specialists in your field. Each one of you failed to correctly diagnosis me. You need to hear my story so that you do not negatively impact another individual's life the way you did mine.
There were, as is common, some indicators of my disease/condition after childbirth at age 23. Hormonal changes, like pregnancy, puberty and menopause, are known to be triggers. I did have a prolonged recovery from childbirth and experienced severe fatigue and some depression. Losing the pregnancy weight was difficult for me. I even had a case of impetigo, which in retrospect was an additional sign that my immune system wasn't working properly. I really should have mentioned the later temporary galactorrhea -- my breasts were producing milk but I wasn't breastfeeding anymore. Maybe one of you would have known it was a symptom? Youth, however, covers for a multiple of ailments and I was soon busy relocating and starting a career and raising my daughter.
Now, more than a quarter of a century later, it is difficult to remember that within two years after childbirth, I had my disease's classic "pain in the throat" symptom, along with hoarseness. It interfered with the presentations I had to give at work, so I consulted two of you. One of you, an ENT, diagnosed voice nodules and recommended surgery. When I got a second opinion from an ENT, you gave me pills you said you gave to "all your singers." I wasn't a singer, but the pain and hoarseness did eventually pass, as did a perfect opportunity to recognize the disease process that had started a debilitating condition in my body. But I was still young and as the next few years brought severe allergies (an allergist recommended allergy shots but I had no time for that) and frequent urinary tract infections (a urologist recommended urethra stretching but I politely declined that) and frequent sinus/respiratory infections (the beginning of multiple rounds of antibiotics over the years) appeared, they did not interfere substantially with my life. Life was still good. Raising my daughter was delightful. I worked during the day and went to school at night and graduated. True, I was often tired as a single working mom. That was normal, I thought. The future was still full of promise.
Moving forward in the 10 years after childbirth, I wondered if the fast food lunches caused the 10 to 15 pound weight gain. And I thought the hair was showing signs of gray because my mom had prematurely gray hair. I thought all mothers were stressed and constipated and using laxatives. And yes, I was sometimes depressed and anxious, but being a single mother wasn't easy. Friends and family kept telling me I was pale and asking, "Are you sick?" But when I was in your offices, you didn't seem vconcerned. I wonder why I never mentioned to any of you that I could not smell. Would you have realized that my nasal passages were already swelling with fluid? Could you know that I would have to wait another 15 years, after proper treatment, to once again notice the smell of apples and popcorn?
When I came to one of you because I really just didn't feel well overall, and testing showed my white blood count was high, you didn't recognize that I had a disease causing inflammation in one of my body parts. You, like so many of the others, had yet another antibiotic prescription for me. "Medicate the symptoms, never discover the origin" -- and never ask any other questions -- seems to have been a common theme with all of you. Is that what they taught you in medical school?
I wonder if any of you knew the percentages. One-third of all women with the condition I had after childbirth progress to a permanent stage of the condition within three to four years. I was one of them--and none of you warned me. Of course you couldn't warn me if you didn't recognize it when it first occurred. You, attending childbirth physician and midwife: You missed it.
By the time I was 33, I thought I had figured out my medical problems. I was an intelligent, well-read individual and I had gone looking for answers in medical books. I found an answer that explained it all. I came to one of you and requested testing for this condition. I was surprised when you told me my test results came back "normal." But I still trusted you all. I didn't know then that you could make mistakes. I didn't know that you let insurance coverage influence your testing requests. I didn't know that you could cause me harm by not trusting my instincts about my body. That kind of knowledge would come many years later, but too late.
Chronic Fatigue Syndrome (CFS) was a popular topic in the women's magazines then. I read the articles and thought I had finally found a possible "diagnosis." There was no cure, however, so I was reluctant to even pursue it. And besides, I had no time for CFS. I had sole responsibility for my child. I had to work. Thank goodness for caffeine pills, which when taken in the afternoon, could help me make it home, feed my child, spend a little time with her and do whatever else it was that needed doing.
