LYME STORIES: Katy Reid (Ridgefield, CT)

Testimony of Katy Reid (Ridgefield, Connecticut) to the Senate Committee on Health, Education, Labor, and Pensions on August 30, 2012

I have always told people that I’ve been sick for over 11 years. But, there is something inherently wrong with that statement. It implies bad luck, chance, something beyond the realm of our control. But this experience was forced on me. It wasn’t accidental. I didn’t have to be sick for over 11 years but doctors in the state of Connecticut chose to ignore the possibility that my multitude of symptoms could be Lyme disease. They were more comfortable watching me suffer month after month than exploring the possibility that my mother suggested to them on our very first visit to the hospital – Lyme disease. I entered the emergency room with a stiff neck, facial palsy and high fever and left with a diagnosis of sinusitis. Why listen to the mother of a cross-country runner, Girl Scout, soccer and lacrosse player, hiker, camper and outdoor enthusiast? Because, really, when could I have been exposed? It didn’t matter that she had seen my sister decline in a similar fashion and recover after a Lyme disease diagnosis, or that she herself had her health return with a long- term antibiotic regimen for the same illness. Without a bulls-eye rash, a known tick bite or the arthritic experience, the consideration was deemed ridiculous. Derogatory comments about Lyme not being contagious and veiled implications of Munchausen Syndrome abounded. The approved approach, instead, was to visit an expert in the field for each individual symptom, of which there were too many to keep count. Whether it was the endocrinologist, neurologist, gynecologist, psychiatrist, internist or pediatrician, they shook their heads when their protocol of choice failed and sent me off to the next one.

After years of stressful misdiagnoses, in addition to the experience of enduring illness, we were able to eventually find doctors willing to diagnose and treat not only the Lyme Disease I ended up having but also the two co-infections, Babesia and Bartonella. However, it was at a huge cost to both parties. The doctors risked their careers caring for me and my parents risked their savings on treatment plans and medications.

I feel so honored to be chosen to testify today, as I was in 2004 when I joined Senator Blumenthal to testify at a hearing on Lyme disease in Hartford. Honored, not because my story is unique, but because being given the opportunity to tell it gives meaning to the years I lost, bed- ridden and angry. And honored, also, because this illness stripped away the moments when I used to feel special or important and I cherish the times where those feelings return. I used to describe myself as social, smart, athletic. But Lyme disease took that all away. It made my previous grades impossible, A’s became F’s, I dropped out of varsity-level athletics due to fatigue, and I watched as major milestones of adolescence like prom, first job, first boyfriend, best friends, were ruined by symptomology and lack of understanding.

In 2004, I said that I wanted our state to care more about its children. Still angry from what disease had unjustly cost me I sought a fresh start as far away as possible; California. When I came back after college, in part to receive continued care for this illness, not much had changed despite the continued efforts of patients and activists. I began a support group for young adults to be able to contribute to the community that had provided me with the information to advocate for my own care. Based in Ridgefield, our support group is geared towards young adults aged 16- 30 and I can tell you that my experience is being retold through the lives of each person who walks through that door. Attendees arrive from all over Connecticut and others have their parents drive them from as far away as New Jersey and upstate New York. There are many more whose experiences leave them bed- ridden during the meeting times, with e-mails of apology awaiting me when I get back home. Parents contact me often; lost, struggling to understand an illness that has changed every aspect of the child they knew, hoping that my support group will return their loved ones some of what they’ve lost; whether its common compassion or a burgeoning friendship.

There are so many patient stories that recount the long term suffering of misdiagnosed and undertreated Lyme patients that those who live in the world of chronic Lyme Disease have almost become numb to them. You simply need to go online, search for a book, or watch Under Our Skin to hear about the physical, emotional and psychological damage. In an effort not to be repetitious I have chosen to speak to you today about some of the lesser discussed, yet shockingly common experiences of the support group attendees. I will utilize my own illness memories to bring familiarity to the collective experience I have been witness to.

To begin with, while it is clear from the testimony of my fellow panelists, as well as my aforementioned scenarios, that there are many shortcomings of the medical world in terms of tick- borne diseases, these institutions are not the only ones that need reform in this regard. Schools, work environments and government assistance programs all fail when it comes to accommodating the needs created by chronic Lyme disease. They choose not to acknowledge its existence, let alone aid the sufferers.

In 2004 in my speech I wanted legislators to know what it was like to be a college student suffering from Lyme Disease in the state of Connecticut, which is, essentially, impossible. Every weekend I drove home to have my IV port cleaned and re-dressed. The student health staff at UConn was ill-equipped to handle my needs and the accompanying lectures about chronic Lyme disease not really existing added extra stress to an already stressful freshman year. Doctors had to carefully re- work my illness into another diagnosis in order for me to qualify for disability services, chronic fatigue being more universally accepted. But, disability services proved to be ineffective, anyways. Accommodations like note takers and extra time on tests were insignificant measures to counter the effects of a brain that could no longer remember and fatigue so crippling that showering used my daily allotment of energy. But, it’s interesting how quickly these experiences become normalized. This wasn’t the first time the educational system failed to understand my new needs. My senior year of high school, with a growing list of absences and slipping grades, I was moved to the Alternative High School. After 12 years at the top end of my class I finished my 13th, and final, year in a one- classroom school with a group of very troubled youth. Having previously surpassed the material of the classes they were teaching I spent most of the school hours doodling in a notebook or sleeping on the couch, essentially being in a holding pen eight hours a day for six months until I was allowed to graduate. I met some compassionate and wonderful people through that experience but it was not an appropriate placement. And I continue to feel repercussions from the transfer, being excluded from class reunions from the traditional high school to this day.

I would say that friends helped counterbalance the negative administrative portion of the school experience but, unfortunately, that was not the case. This highlights my next topic; the medical viewpoint of the nonexistence of chronic Lyme disease has infiltrated popular opinion in society, for everyone except for those who have experienced it firsthand. The alienation that young persons feel can have a significantly negative impact, lasting beyond recovery. It is amazingly swift the rate friendships disappear with the strain of this particular illness. When I was first diagnosed I watched this begin to happen. I was excluded from group projects because they worried my failing memory would affect their grades, teammates found they had nothing in common with me when I could no longer compete, and others, more bluntly, told me they just couldn’t handle being around someone who was sick. They considered themselves experts in my disease and I was told after months of bed- ridden periods and dark moments of depression that “Lyme doesn’t do that, and it certainly doesn’t last this long.” My closest friends stood by me but now, 11 years later, that is no longer true. Each one eventually grew tired of cancelled plans and the one- sided nature of having a friend undergoing continuous traumas beyond their comprehension. At 27 years old I can count the number of friends I have with less fingers needed to fill a hand, and half of them are my family members. When forming new relationships I have been conditioned to dread the moment they find out that I have had chronic Lyme Disease. When it inevitably comes up that I’ve been sick for a long period of time, sympathy abounds. But then, there’s a moment of internal hesitation before I say my diagnoses, knowing that this will be the point in time where their opinion of my experience will change for the worse. Attendees of the support group often say that they are waiting until they are fully recovered before attempting any form of sociality. They find it easier to have no friends at all than to feel the weight of endlessly disappointing others. I hear them yearn, aloud, that they had some other illness that people wouldn’t find so easy to judge. They talk about how they wish they had Cancer instead just so people wouldn’t be so comfortable, even righteous, dismissing them at their lowest moment.

It isn’t just friendships that get affected, though. Young adults sit around the table once a month in meeting and, devoid of emotion, discuss how they will not date, marry or have children as a chronic Lyme disease patient. In part, this is because they are afraid of the rejection this illness has forced on them time after time and, in part, this is a direct reflection of fear created by a lack of information and research. They don’t want to burden a partner with the responsibilities of caretaking and share concerns of spreading the illness to others. The fact we know is that Lyme Disease is closely related to Syphilis. What we don’t know, yet, is if it can also be spread through sexual transmission; the research has not been completed. So, many young people take the failures of science and funding onto themselves, refusing to get close to another in that way when the chance they could spread their pain, frustration and suffering to others is unclear. How sad that our infirm youth feel more personal responsibility in this regard than the medical world itself. The same logic applies to pregnancy. 17 and 18- year old girls have already made the decision not to have children rather than risk the possibility of bringing a child into the world with an illness they have so long have felt the repercussions of. It is a concern I myself share, though I remain optimistic. Doctors always respond to my inquiries with a resounding “No, transmission in utero is impossible!” But, I find after a moment more of prodding that their certainty on the matter is based on their belief that this illness isn’t even serious enough to consider that situation, not the presence of factual information backing their opinion. Other patients plod forward, hopeful, declaring that “Everything happens for a reason,” the oft-spoken and seldom believed mantra of Lyme disease sufferers.

These stepping stones of adulthood that many take for granted are just one component of the circumstantial situations that are the repercussions of this illness. Families are falling apart under the strain, young adults are unable to hold down jobs while they lay in bed and age out of their parent’s insurance policies, and the cost of out of pocket care means that though many come to understand what they need to get better, they are prohibited due to financial constraints. Imagine making a decision at twenty- four that you simply have to live a half- functioning life because there are no clear or affordable options available. Sometimes they find it easier to deal with a more universally accepted, yet inaccurate, misdiagnosis than struggle, alone, through the terrain of tick- borne illness.

Lyme Disease has irrevocably changed me. I have joined the masses of patients who have come to the conclusion that progress begins with us; the institutions we once idolized failing to acknowledge the level of human anguish in front of them. Even when I step outside of the advocate arena I cannot leave these illnesses behind. My occupation has me in Bridgeport, Connecticut working in the school system with approximately 80 youth. Not one of them has ever heard of ticks or Lyme disease. Being inner- city their doctors have deemed preventive discussion unnecessary despite the fact that they often visit parks, summer camps and travel with their families around the state. The awareness measures completed through the efforts of volunteers, such as the BLAST prevention program and our local task force, cannot reach these areas without funding for growth. We are the state where this illness was first recognized in America and we need to be the leaders in its prevention. It is hard to believe that we have nothing about this illness in our school health and science programs and health departments are not given the funding and educational programming necessary to teach their communities what personal safety in the state truly requires.

Money, determination and, frankly, indignation have fueled my personal recovery. But as each symptom has slowly dissipated I’ve said goodbye to night sweats, facial agnosia, bells palsy, hair loss, memory loss, debilitating fatigue, severe stomach problems, endocrine and hormone disruption, personality changes, learning disabilities, loss of word retrieval, to name just a few, only to greet the emotional side effects to having illnesses that have been deemed illegitimate. I testified in 2004 and I am here again today. I am thankful for the opportunity but wonder how many times we can document the pain of constituents without change. This bill is a great beginning and I’m here today in support of it, thankful to Senator Blumenthal and his continued efforts. My personal hope remains, as it has for the last 11 years, to witness the cessation of suffering of Lyme disease patients and to never again see the events of my life played out in the children I see participating in sports, camping, playing with their dogs, experiencing childhood in the state of Connecticut unaware of the risk that awaits them.

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