Managing My Mystery Diagnosis

This is a complicated story to tell, yet it’s one that I feel needs to be told. I know I’m not the only one who has experienced the travesties of a life in medical limbo. But I may be more vocal than others who have a similar story. The thing about having a mystery diagnosis is that there isn’t any text book I can refer people to. There’s no support group for people like me. And often, there aren’t any legal protections or services. (Social Security Disability programs and ADA protection are often useless for the patients whose limitations are not easily interpreted.)

As a result, it has been necessary for me to learn to be my own advocate, healthcare provider and number one supporter, all while also being the patient. It’s not something I would wish on anyone yet I also see the upside to these experiences. Because of them, I can relate to others when they are going through their own hardships. I know better than to think that people should snap out of it or find a distraction. I have also learned to be more adaptable and to recognize that life isn’t a series of check boxes. It’s a journey, and like most journeys it is often unpredictable. This attitude has allowed me to take chances that I would have missed if I had been too rigid in my approach to life. I wish that philosophy hadn’t come to me as a consequence of hardship but nevertheless it’s a philosophy I’m proud to own.

My story began at the age of 26. Actually, it probably started way earlier than that but it wasn’t until I was in my twenties that my semblance of normalcy was thrown into question. I was a frail kid. I fainted every time the temperature reached over 95 degrees Fahrenheit. I always had an upset stomach. In fact, each time we went on a family vacation my parents would have to pack a bottle of Pepto, just in case there was an event. And more often than not I ended up consuming some of that pink stuff. Now, in my early forties, I can’t look at a bottle of Pepto without feeling queasy. So being a bit unwell seemed typical to me. I didn’t question it when, in college, I found myself every two to three months bedridden and whimpering from attacks of abdominal pain that lasted for a full 24 hours. I didn’t think anything of it when I kept having attacks of food poisoning, or when I had fevers that exceeded 103. I didn’t understand why people talked about the freshman 15. I lost weight when I started college. When I was in my early twenties those college symptoms continued, by they were accompanied by chronic back pain, hives, fatigue, muscle weakness, asthma, rosacea, dry eyes, constant infections and a host of other conditions. And the stomach problems continued. At 25 years of age I stood at 5’5” and weighed in at a whopping 106 pounds. I was diagnosed with IBS. I was told that I had multiple environmental allergies. I was prescribed an asthma inhaler and I was ordered to wrap all of my bedding in covers that eliminated dust mites. I carried around a bottle of saline solution and doused my eyes with it every 15 minutes, yet I continued to have trouble wearing contact lenses. I never went anywhere without cortisone cream and advil. A BMD revealed osteopenia. A chiropractor said my pain and bone strength would improve if I found an exercise routine so I joined a gym, but all forms of exercise I tried only exacerbated my pain. My gynecologist was stymied by a series of infections that weren’t infectious, and drew a conclusion that my immune system was failing. Yet, even though he was affiliated with the same hospital as all of my other providers, none of them consulted with one another (despite my pleas). I tried going to a homeopathic doctor who misdiagnosed me with a rampant parasitic infection and prescribed a course of medication that nearly killed me. The first night of my treatment I woke up on the bathroom floor. The doctor insisted that I needed to continue with the plan and accused me of having a fainting episode because I was anxious and simply hyperventilated. I stuck with the treatment but I didn’t stop vomiting until the treatment concluded twenty days later. After the completion of the treatment I felt no better than I had when I started.These health issues continued to escalate until I weighed in at 92 pounds. I eventually diagnosed myself with endometriosis of the gut, a diagnosis that was confirmed upon surgery. It wasn’t until nearly twenty years later that the diagnosis of adenomyosis – a possible explanation for my constant back pain – was revealed during my fourth time on the operating table. I determined that an earlier appendectomy was likely unnecessary. I also determined that I had a gluten sensitivity, so I put myself on an elimination diet that brought some relief. And it was around that time my mother found an article in Ladies’ Home Journal about autoimmune disorders. It sounded like me. I made an appointment with the physician who was mentioned in the article. After a Lupus test came back negative, to my doctor’s surprise, I was given the diagnosis of Undifferentiated Connective Tissue Disease. In regular English, this means I have the symptoms of a CTD like Lupus, but I don’t have the markers that meet the eligibility for a specific medical label. And without that medical label, there is also no clear treatment plan.

Other than the occasional rash on my face, I look perfectly fine. That is, of course, positive in many ways but it means that others just don’t get it. They don’t understand why I can’t join them for a 5k race, or why I can’t participate in certain team events at work. They don’t understand why I have to limit my alcohol consumption and they make fun of me when I cut myself off after two rounds. They don’t know why I always have to sit down, or wear ear plugs if I go to a concert. And they think I wear glasses because I don’t care about my appearance. Yet I hear the opposite accusations when others witness how much luggage I take with me when I go away. This is because I must pack a separate bag to hold my current medications, potions and products to prepare for the inevitable flare-up of something, and a variety of gluten free snacks. When others see the size of my luggage, they accuse me of being vain and perhaps taking too many shoes. Or when I go for massages in an attempt to control my pain I’m labeled as a princess. I can’t win. These inane remarks aren’t meant to be hurtful but of course they are. I simply have to think about things others don’t. I would prefer not to be reminded of that, as if I’m not already aware. I am proud of how I dealt with my illness.

Once I, on my own, stabilized the worst of my symptoms, I came up with a strategy to get back to the life of the living. I got an apartment, finished my graduate school courses, and began production of a documentary to raise awareness of autoimmune disorders (now complete). Unfortunately, I still had massive medical debt and student loans to handle as a consequence of those years when I could not work. I didn’t want to file bankruptcy and checking out of life was not an option for me. Also, as someone with an “invisible disability,” I didn’t quality for any government aid. I needed a steady job. I suspected that most people with my medical history simply would not (and could not) work. This meant that their knowledge wouldn’t be integrated within the philosophies of the healthcare industry. So I decided to fix that disparity and I went to work for a major pharmaceutical manufacturer. This was my chance to provide the patient perspective in an industry that had built a reputation for being out of touch with the consumers they claim to serve. That was thirteen years ago.

My career has developed and I enjoy what I do. It’s intellectually satisfying and it has given me the independence I need. And I never forget why I’m here. However, the fact that I’m not here to climb the corporate ladder seems to puzzle my colleagues. I always find myself wrestling with the question of whether I should share my past, and my motivations, to defend my outlook and absence of a solid career plan. Or should I stay silent and not “out” myself as being different? That is the difficulty of being invisibly ill. If you look like everyone else they don’t understand why you don’t act like them. It also raises my awareness that the philosophies I came here to promote are still blatantly absent from our corporate discourse and consciousness. So my work is not done. My medical limbo may never end, but I still believe the utter lack of awareness about invisible disability will.