Let it Be: Lessons From a Lymie

Lessons learned from Lyme Disease


Ignorance Is Not Bliss

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. 

1. http://www.newyorker.com/online/blogs/newsdesk/2012/10/mitt-romney-versus-lyme-disease-and-science.html

2. http://www.slate.com/articles/health_and_science/science/2012/09/chronic_lyme_disease_delusion_romney_campaign_pushes_medical_nonsense_.html

3. http://www.lyme-disease-research-database.com/lyme_disease_tests.html



Sick People Aren’t Martians

What do all humans have in common?  This was the question I considered one random day while I had nothing better to do than to give my brain a nice challenge.  I began sifting through all the various traits I could think of. Finally, I arrived at my answer.  No matter how different humans are and no matter the quirks we possess, in the end we each desire love and the respect of others.  Now, some people will read this and say to themselves, Not me!  I don’t care what others think about me.  To that I say, yeah right.  Even if you don’t think you care anymore, you did at some point and you most likely still do.  This innate human yearning is no different whether you are healthy or stricken with illness. 

I have heard stories from fellow Lymies who mention losing friendships and feeling the lack of concern of family members as they have fought through their illness.  I gave this a lot of thought, wondering how people who claim to care about you so much could abandon you during a time when you need them most.  My conclusion was that much of our society feels awkward when it comes to those with chronic illnesses.  They don’t know what words to say or how to act.  That conclusion made my heart split. 

On behalf of the Lyme community and others dealing with chronic conditions, please know this:  Most of us do not wish for your sympathy.  We do not long for your constant attention.  We simply ask for authenticity. We ask for you to be ready to listen when you ask us how we are feeling.  Sick people aren’t Martians. Underneath the unpredictable symptoms that keep us on edge every minute of the day, we are people who desire the very same things normal-functioning, healthy people desire. Most of all, we long for wellness so we can achieve great things and be the people we were created to be. 

I have learned in my journey through Lyme disease that this is a community of amazing and brilliant individuals.  People with chronic illnesses are some of the most creative, talented, strong, sensitive, empathetic, and passionate people you will ever encounter.  These are a group of people who have bravely battled their way through something no one should ever have to endure, but they have come out on the other side with an enhanced perspective and a tremendous will to better themselves.  They get it.  They get what life is really about, because they have been forced to sit back, slow down, and live in each and every moment. It is truly a lesson every human being desperately needs to learn.  In the beautiful words of Barbara DeAngelis in her book Real Moments, “Look around you—you will see someone who needs your love.  Offer it to them.  In that moment, you will be their blessing.  And God will be smiling.”

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The Great Lyme Crime

When I think about Lyme Disease, I liken it to a burglar who waits for just the right moment and breaks into your home, destroys everything in his/her path (including that out-dated kitchen of yours), steals everything that means something to you, but leaves a stack of cash on your table for you on their way out.

In other (less dramatic) words, when Lyme entered my body, it hibernated for quite a while, waiting for just the right moment to reveal itself. For me, that “right moment” was when I contracted mono at the age of 17. Little by little, it began destroying my body as it made its way into the deep layers of tissue. One day I would be very symptomatic to the point of needing to be in bed all day. The next day I might have one less symptom, allowing me to get a few things accomplished. In a short 24 hour period, it wasn’t uncommon (and still isn’t, although it’s frequency is less) for me to experience tingling feet, throbbing legs, heart palpitations, shooting chest pains, nausea, severe headaches, fatigue, and shortness of breath. That’s just one example of what a “Lymie” might experience in one day. Lyme is the gift that keeps on giving, but it’s that gift you’d do anything to find the receipt for so you can return it immediately.

Lyme also tried to wreck my dreams and the goals I had for myself. Because of my unpredictable body, having a job in my field has not really worked out so well for me. Having children also didn’t come as quickly as I thought it might. Lyme made me question many things in my life, but I still haven’t allowed it to totally rob me of everything I want. I’ve come to realize I don’t always get my way, and that’s okay.

So how, you ask, do I compare Lyme to a burglar leaving money after robbing you blind? Lyme has taught me an incredible amount about myself. It has shown me the strength I have. It has given me a deeper insight into those who suffer from chronic illness. It has given me the gift of compassion, even for those I have never met. In the end, I win after all.

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Doctors Are Not God

Before I offend anyone, allow me to first clarify.  I know several doctors personally, and I’ve always admired the grueling number of hours they put into medical school.  Growing up, I was always under the impression, as many of us are, that doctors were the key to me getting better when I didn’t feel well.  They were the answer to my health problem. Oh, I’ll just go to the doctor and get an antibiotic, and I’ll be on my merry little way in no time. Boy was I a fool! I learned the hard way this isn’t always the case.  When it comes down to it, doctors are not God.  They have received insane amounts of training and have been bombarded with an overwhelming amount of information.  The body is such an intricate creation. With that being said, how could I, or anyone else, expect a doctor to know the exact problem I’m having every single time?  The truth is, doctors know what they were taught in medical school and what they’ve taken the time to learn on their own.  Outside of that, much of what we, as patients, experience is trial and error or simply a routine process based on symptoms.   

Our society puts a tremendous amount of faith in what the doctor tells us. It is always vital to remember:  Doctors are humans just like the rest of us. While that sounds like a simplistic notion, it is still one we must always keep in mind. One of the biggest lessons I have learned through my Lyme journey is that I am responsible for my own health, not doctors.  I have also learned that I can be angry at all the doctors for not having the answers, but ultimately, being angry does nothing for my healing. I determine what enters my body. No matter how many times I am made fun of for what I choose to eat or belittled because I choose not to engage in the same poor food choices as others, I am still responsible for the health of my body.  God designed me, weaved me together, and breathed life into me.  The least I can do is take care of what I have been given.  I am the only one who lives in this body; therefore, I am the only one who truly knows what it feels like to be me. 

It is time to stop complaining to doctors that we are not feeling good and take control of our bodies.  The Internet houses so much valuable information. Yes, we must weed through the misinformation in order to get to the truth, but that is part of the journey.  The next time you go to the doctor with an ailment only to get a generic answer, do not stop seeking answers until you get the right one.  Ultimately, we only have one life to live on this Earth.  We owe it to ourselves to make it the best we can.


My Lyme Story


It was the fall of 1999.  I was a senior in High School, enjoying life, playing soccer, and doing what high-schoolers do.  One evening I was shopping with my mom.  We were looking at clothes, like mothers and daughters often do, when I first knew something wasn’t right.  My body literally changed in an instant. My neck suddenly had painful lumps protruding from it, and I felt terribly sick in every way possible.  I truthfully thought I was dying.  I had never experienced this type of sickness.  I made it known to my mom that something was wrong, and I needed to leave the store immediately.  I ended up in the hospital that night with all the various tests being done.  Because of my symptoms, the doctor thought I may have meningitis (very scary).  He called for a spinal tap to be done-one of the worst things I’ve had done to date.  The tests came back negative for meningitis (thank goodness), but after countless numbers of vials of blood were taken, I was told I was positive for mono. Great, (I thought), now I have an answer.  I assumed I would be back to normal after a short period of rest. Little did I know that was only the beginning of my troubles. 

Mono destroyed many things in my life at that time. I missed 15 days of school which easily could have been more had I not been so determined to go back.  It also ended my soccer season which by far devastated me more than feeling sick.  I went back to school and tried to get back to my normal life with my friends.  I never felt well again, but they never knew. (I guess my drama class in high school paid off.)

The next fall, I went off to college.  I had initially wanted to go far away to school and had even looked at schools in other states; however, I think I always knew deep down I needed to be closer to home because of my health.  That turned out to be a good decision.  During college, I continued my downward spiral and ended up in the hospital on numerous occasions for various infections, dehydration, and chronic stomach pain.  Again, no one really knew much about what I was feeling inside.  I kept those feelings to myself most of the time.  College was a time for fun, after all. 

With each passing year more and more symptoms would show themselves, the most difficult being my constant fatigue, no matter how many hours of sleep I got, and my dizziness and visual disturbances. I began to fear there was more to the story than just mono.  Throughout my college career, I started seeing specialists of various types.  We checked into anything we could come up with as a possibility (allergies, heart problems, ear problems, TMJ, brain problems, eyes, sleep disorders, etc.) .  My mom would often contact me with another possibility she found through researching on the Internet, only to have it later ruled out by yet another doctor.  This became a very frustrating cycle that didn’t end until April of 2011.  (Yes, it took that long!) That’s when it became clear my intuition and various symptoms had been trying to tell me something all along.  There had been more to my health than just mono.  My body was trying to fight Lyme Disease.  I later found out through research and learning through others that mono is often the illness that stirs Lyme within the body.  In other words, prior to the mono, my body was able to deal with the Lyme more effectively.  It wasn’t until I started going back through old medical records from my childhood (chronic infections in the throat, bronchitis, chronic stomach pain, difficulty swallowing, random fevers, etc.) and thinking back to a time when I had a tick embedded in my scalp around the age of 8 years old, that I began putting the pieces together of my health mystery.  What lesson did I learn from all this? I learned how important it is to document things in your life.  Over time, trips to the doctor all blend together (trust me), but these trips and test results often hold the key to the real issue. 

Now that my Lyme story synopsis is out of the way, I can jump into the many lessons Lyme has taught me.  I’m still learning lessons every single day, and for that, I’m truly grateful. 🙂

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Let it Be

Welcome to my Lyme blog.  I’m excited to share some of the lessons I’ve learned as I’ve journeyed through Lyme Disease for over a decade. I’m 30 years old and have spent the last 13 years searching for answers as to why I felt like an 80 year-old woman virtually every day of my life.  It took me 12 years to even get an answer as to why I was feeling this way.  Unbelieveable. I’m no expert on this horrendous disease that tried desperately to rob me of my normalcy.  In fact, I still have questions about it daily, and often those questions are left unanswered.  You see…most Lymies (as we refer to ourselves) have so many questions about our disease, it only leads to more frustration (which often impairs our healing even more). I hope through this blog there will be more awareness about Lyme.  I also hope this blog will bring my fellow Lymies a sense of hope.  Trust me, I know the hopelessness Lyme can bring, and it’s not pretty. I have learned many lesssons from Lyme.  One of the most valuable lessons I learned from Lyme was sometimes you have to just Let it Be and try again the next day.