Two Years Later

Hi All,

First, I am so humbled that this blog has helped others find relief from their chronic hives. Since the blog was first posted, it has been viewed nearly 10,000 times by about 6,000 unique viewers. So if you find your way here, you shouldn’t feel alone.

When I first broke out in chronic hives, I was 23 and living in Tampa, Florida. A lot has changed since then. I’m entering my third year of law school and I’ve moved to Columbus, Ohio to remain near my boyfriend of about 4 years now while he goes to medical school. As you might imagine, my life is a little hectic, and it’s been difficult for me to keep up with this blog.

But today I had a disappointing visit with an Allergist, and I wanted to come here and share my experience with you all. I hope this story gives comfort to others.

For some background, I’ve more or less completely avoided doctors since I got my symptoms under control on my own in 2013. You can read all about that in the About section of this blog. But to offer a brief summary, I suffered from increasingly painful gastrointestinal issues for my whole life. The symptoms become intolerable around my 22nd birthday in 2011. From 2011 to February of 2013, I bounced around from doctor to doctor. I eventually found probiotic supplements which alleviated the intensity of my symptoms, but I had to keep increasing the dosage to keep my stomach upset under control. Without the probiotics (which I discovered in mid-2012), I had extremely painful bloating, diarrhea, a lack of mental clarity, and lots of other delightful sensations. Most doctors were well meaning and kind, some were impatient, none had answers.

In February of 2013, with my gastrointestinal issues still undiagnosed and self-medicated, I broke out in chronic hives. Again, you can find a more detailed story with pictures in the About section of this blog. These hives were intense, and for six weeks I again bounced around from doctor to doctor. Again, I eventually found my own solution by researching national institute of health articles (for the most part). The solution I found was a radical diet change, and I’ve stuck with it to this day (two years later). Serendipitously, the diet change also proved to be a very effective treatment for my gastrointestinal distress. I went from being entirely dependent increasingly large doses of probiotics to make it through the day, to not having to take them at all! I felt incredibly relieved and grateful. To this day, when I deviate from that diet the hives return, and when I stick to it I do very well.

Because I had solved the problem on my own, I stopped going to doctors. Somewhere along the way, I developed a vague dislike for them. This was probably unfair, since it flowed mostly from a particularly bad experience with a certain allergist. Most (but not all) doctors that I met were kind, patient, and willing to listen to my story without judgment. Nevertheless, I came to resent their confined approach to medicine. If I saw an allergist, he or she would ignore my entire life long history of gastrointestinal distress and look only for a handful of symptoms. It was as if the doctor would just check symptoms off a list of a pre-approved list. This was true across specialties: my gastroenterologist did not entertain my bizarre hives when considering possible diagnoses. It seemed (and still does seem) obvious to me that whatever is wrong with me requires “outside of the box” thinking, but to this day I’ve never encountered a doctor that was willing to think about my body as a whole. They focus only on particular organs or systems, but never consider how those systems might be interacting to produce irregular and inexplicable symptoms. It is very frustrating. I am certainly not qualified to offer an alternative, but I can’t say the current approach makes any sense to me.

I recently went back to the doctor to “establish” as a new patient after moving to Ohio. This was my first time back to a doctor’s office in about two years. My experiences were similar, and today culminated in one of the more inappropriate visits I had to date. I met with an Allergist today. I explained this whole long saga, telling her that I at one point stopped seeing a different allergist. At some point, she seemed to have judged me for a difficult patient who would never think her doctor was good enough. She ordered skin-scrape allergy tests “to give me peace of mind,” a comment I find frustrating, judgmental, and unnecessary. I said the allergy test would be fine if she thought it would be helpful. They administered the test, it came back negative, so I do not have allergies to the foods that indisputably cause me to develop hives. (At some point she said physical reactions range from ‘allergy’ to something else, and an allergy test only tests for a specific type of physiological reaction. Just because I don’t have an “allergy,” that does not mean I do not have reactions). When she came back to discuss the test, she said “the allergy test results were negative, but you [meaning me] probably would have preferred a positive result huh?” I can only guess at what she meant by this. Of course I am happy that I do not have the kind of allergies that lead to anaphylaxis. If I were to give her the benefit of the doubt (which I am disinclined to do), I would guess that all she meant was that I would have preferred to have an answer for all my troubles. Based on her tone through the whole visit and a number of other off hand remarks, I am inclined to assume much worse. Regardless, it was a hurtful comment. I felt pre-judged. I felt as if she believed me to be a liar.

I also remembered the acute sense of desperation I used to feel when my symptoms were out of control and doctors would treat me like I was either a freak or a bother, and when time and again I would go home from their offices with no hope and only a co-pay to show for my time. I also acutely remembered my self-doubt; was I crazy? Was I making this all up?

Thankfully, I have a patient and caring partner (my boyfriend) who, every time I feel like that, reminds me that he has seen my hives and other symptoms, and I am not crazy and I am not making things up. But I can’t imagine going through this all alone. I wanted to write this post so that anyone who has the feelings knows that he or she is not alone. I would imagine many people with undiagnosed or idiopathic chronic disease have these feelings. You are not alone. Doctors are not perfect and make many mistakes that can hurt their patients emotionally and physically. Most of them do not intend to, but that is of little consolation to a suffering patient who goes home that day with both hurt feelings and a chronic condition that remains as mysterious and unknowable as ever.

Good Luck to Everyone,

Kim.