At the end of September, Mitt Romney, the Republican candidate for President, sent out a flyer proclaiming his desire to get control of the “massive epidemic” of chronic Lyme disease “wreaking havoc” on the residents of Virginia (See link 1 below). While my blog has nothing to do with politics or the endorsement of either candidate, I felt it was imperative I address this news story based on the reaction it received. Right after this story hit the media, journalists began responding, mostly in a very critical way.
One article that especially stirred up those of us in the Lyme Community was that of Slate Magazine written by Laura Helmuth (See link 2 below). In her article, Ms. Helmuth spewed ignorance from start to finish. She commenced by saying that if testing is done for Lyme that results in a negative diagnosis, the doctor should look immediately to depression as the possible cause of the symptoms. Wow! Where do I begin? What this self-proclaimed expert on Lyme disease does not tell her readers is that the testing for this disease is extremely faulty. This has been proven time and again with patients who repeatedly test negative for Lyme and eventually after having multiple tests performed, receive a positive. She also fails to explain how Lyme spirochetes hibernate in the deepest layers of tissue in the body. Depending on the current state of the spirochetes, they often are not detected through the current testing (See link 3 below).
Ms. Helmuth also suggested, through the use of her “own story about chronic Lyme disease” that it does not even exist and that, furthermore, those of us who believe we have it are actually suffering from depression. In other words, we are all hypochondriacs. This is beyond offensive. There really aren’t words adequate enough to describe my exasperation. Interestingly enough, depression is one of the RESULTS of having Lyme. The reason is two-fold. Some of us have brains that are affected by the disease. Anywhere you read about Lyme, you will see neurological damage as one of the possible symptoms. Furthermore, who wouldn’t have depression after going through years of chronic health problems? Apparently, Ms. Helmuth needs a lesson in cause and effect. It is also telling that she automatically assumed her friend who was diagnosed with chronic Lyme did not have it and that they simply were depressed since they ended up committing suicide. Assumptions get us nowhere. (I will be addressing the subject of depression in a later post for those who would like to know more about the topic and how it relates to this disease.)
Finally, Laura Helmuth refers to the chronic Lyme community as “vulnerable, confused people”. This is a very powerful label, coming from someone with no actual personal experience with chronic illness and/or years of misdiagnoses, to put on a group of people who are simply asking for recognition and better treatment and testing. It looks like to me Ms. Helmuth is the “confused” one. This response, along with the numerous others like it, served as a valuable lesson to me. People are very quick to judge others when they have no concept of what an individual experiences from day-to-day. People with chronic illness are so often overlooked and disregarded because they appear to be well from the outside. To Laura Helmuth and the other media outlets that decided to mock chronic Lyme disease, why don’t you try using your position to better the world instead of for some sort of political agenda? Since when did politics take precedence over a group of people who are suffering? Spend just a few weeks walking in the shoes of a person with chronic Lyme, feeling the symptoms they feel from minute-to-minute, and experiencing the hopelessness and despair, and then tell us it isn’t real. Ignorance like this is not bliss; it is a crime against humanity.