Which one of you doctors hurt me the most? That would be you, dermatologists, who saw me over a period of 11 years and never once connected the dots from the clinical presentation to the pathology reports. Why didn't you look at me? Why didn't you see the pale, cool and flaking skin? My nose was broadened and my lips were swollen. Did you not see the fluid in my hands? How did you miss the patchy vitiligo so often associated with my disease? You dermatologists are often the first to recognize these problems, because the skin-related symptoms of my disease are sometimes the first sign. You failed me. And not only did you fail me, you even caused further irreparable damage to my face.
My mother died when I was 38. I reviewed her autopsy report and saw abnormal findings in the same body part I had suspected was dysfunctional in me. When I told one of you in hopes of finally being believed, you just looked at me as if I was an imbecile to be tolerated. You offered no information. You only offered to do the usual test that you all have done when I asked. And once again it was "normal" -- according to you. Now more reliable, knowledgeable sources tell me that all my labs really weren't so "normal." In fact, those labs did indicate a problem. Furthermore, they tell me that the presence of the disease from which I suffer caused the lab test you did to be unreliable. Didn't any of you know that?
Do any of you know even know "the standard test" has new recommended reference ranges? If you know, have you called all the patients like me and reassessed them? I think you should. You thought your scientific lab test was so infallible, but patient history and clinical presentation is important. We are living, breathing human beings. We are not just lab values, even though if you had to have a lab value, you did have the elevated cholesterol and triglycerides. Did you not recognize that symptom either?
Sixteen years since childbirth and six years since I first told one of you what I thought was wrong, I started the decade where I visited so many of you. You were specialists in all the areas of my body that now weren't working right. I couldn't ignore it any longer. You, the psychiatrist, prescribed anti-anxiety medication to me (which I took for 10 years and stopped within two weeks of proper treatment) and we talked a lot. Ironically, in all those talks, you hadn't managed to discover that I had social phobia and social withdrawal, did you? Nor did you ever discover I had become ultra-sensitive to the comments of others. Even the OCD tendencies had eluded you. You didn't recognize these as possible signs. I have often wondered what diagnosis you did give me. Was it the usual "depression" those with my condition all seem to have gotten? Or did you diagnosis me with the popular "generalized anxiety disorder," another misdiagnosis we often get?
I think if you had been more knowledgeable about my disease/condition, you could have detected my lowered frustration level. Why did you never ask my about a loss of a sense of well-being? I didn't know "impending doom" feelings were so terribly abnormal. I even think proper diagnosis then could have saved me from future estrangement from some family members because it is true that this disease/condition changes us. They didn't understand why I was changing and why I could no longer participate in family celebrations. And yes, we can become irritable and intolerant. After my diagnosis, I read time and time again that it is supposed to be standard procedure to always check for my condition, yet you never even once mentioned it to me. I guess cured patients don't pay $100 plus per visit. And a short word to you, the plastic surgeon, did you know that some of us have self-image concerns? Maybe this is something you need to know more about too. One symptom of my condition is not healing well. In my case, my body attempting to finally heal from cosmetic surgery caused complications many years later.
When I visited you, the OB-GYN, complaining of menstrual problems, didn't you know it was a symptom? Did you think the ovarian cysts were also just coincidental? I really don't know how you, the gastroenterologist, who after the standard colonoscopy showed no abnormal findings, could just dismiss me by saying "Irritable Bowel Syndrome." How could you, after my multiple visits, fail to tell me about a condition that could cause my assortment of digestive problems? Why did you just want to medicate me? I read the drug insert and threw those pills away. I continued to live in pain, and why not? I'd suffered with various digestive problems for over a decade. Maybe I'm not so surprised at you, pulmonary specialist, because few seem to know about the "air hunger" and other respiratory problems my condition can cause. I hope those asthma medications (and courses of steroids) I took for over a decade didn't cause too much harm.
I was embarrassed to mention to you my earwax problems. I know now I shouldn't have even had to do that. Excessive earwax can be a symptom. I was surprised too to learn that so many of us have had unusual rib pain, called costochondritis. So I understand why some of you didn't recognize the origin of the problem that presented itself a few times. And you, the emergency room physician, you never even thought to think of my condition that could cause heart and chest pain symptoms, did you? Was that EKG really normal I wonder? Or was it just normal enough to send me home?
