Caravan Sonnet: The Lyme Diaries: the emotional side of Lyme Disease

3/26/15

The Lyme Diaries: the emotional side of Lyme Disease

Although I speak often about Lyme Disease here on the blog and share snippets of the journey on my instagram, there is a very real topic that has been close to my heart and part of an active conversations among my lymie friends... the emotional side of Lyme. I have alluded to a couple of things in this space but never really delved into this topic in full detail until now. I think just the writing on this topic took me a while to process through my thoughts and feelings but I do pray and hope that it is an encouragement to other lymies and their loved ones! 

Lyme Disease is incredibly emotional for the one walking through the journey. There are many reasons for this but below I just wanted to share a snippet of a few. Friends, when you think of your friends with Lyme Disease would you pray for them about these things? Lymies, I know how hard this topic is so hopefully you can simply pass on these thoughts to ask for prayer on these subjects! Today I am going to be sharing things that make Lyme Disease emotional and next week will be sharing some tips on how to deal with the emotional side of Lyme! So here are the things that make Lyme Disease emotional...

(1) The Difficult Path to a Diagnosis. In the introduction of my "Praying through Lyme Disease" book I shared the following:

"The book that you hold in your hand has been written from my heart. I found out I had Advanced Late Stage Lyme Disease the day after my 33rd birthday. For the previous six years prior to that day I had experienced a myriad of intricate and confusing health symptoms that never made sense to any doctor. I had spent hundreds of hours traveling across the United States talking and consulting with some of the best in the country. No answers came and I was eventually told that either (a) this was “in my head”, (b) I had a very “complex case” of Chronic Fatigue Syndrome (for which I had been diagnosed for) or (c) “stress was contributing to these issues”. Finally, after seeing 273 doctors in one year, seven years of searching, hundreds of invasive and painful tests, and thousands of prayers, I was correctly and accurately diagnosed with Advanced Late Stage Lyme Disease. While my family and I rejoiced that there was finally an answer, I also experienced a range of emotions as I was furious with the medical community and overwhelmed with where to go from that point on."

Unfortunately, for many their journey to a diagnosis is a MUCH more difficult path than even I experienced. Many spend years and decades going through hundreds of painful tests, countless misdiagnosis' and spend thousands of dollars trying to understand what is going on in their body. This process is extremely lonely, scary, frustrating, and demoralizing. 

(2) After the diagnosis. I shared a little bit about my journey after the diagnosis of Lyme, but for many patients this time is a confusing time of trying to understand new lingo, new medical jargon, and make decisions that are best for their health. Many times patients start off going in one direction in their journey but complications and/or issues with co-infections cause a patient to make a turn in their treatment plan. This is often very confusing for outsiders to understand and many patients experience criticism or unhelpful/unwelcome/unsolicited advice from those who do not understand Lyme Disease. It can be incredibly difficult to be fighting for your health while dealing with all of these complications. 

(3) The Long and Winding Road to Healing. Two weeks ago I shared about the long and winding road to healing that lymies experience. 
The process is long, draining, and emotional. You can read more about it HERE. Unfortunately, many loved ones and friends have no concept of the time, energy, and determination it takes to beat Lyme. This unfortunately can lead to number 4...

(4) Loss of Friendships & Loved Ones. Whether it is due to the long road to healing, the lack of understanding about Lyme Disease, or just the general way our society wants things "instantly", it is an unfortunate and disappointing reality that many people walk away. I hate hearing about it among my lymie friends, but the sad truth is that I have experienced this myself. It is a painful experience and one that has to be brought before God often as you walk through it. 

(5) Hurtful Comments. In this journey I can honestly say that there have been thousands of hurtful comments that occur. Many times these comments come from "well meaning" people who are trying to help but they are nonetheless hurtful. Just recently I received some unsolicited advice about how long my treatment was taking and how I had allocated funds on my "Go Fund Me Page". I was shocked, hurt, and honestly it brought me to tears. I am so thankful for beautiful friendships that have walked and prayed with me through these situations, but many people do not experience this sense of comfort. This can definitely create even more isolation for the patient. 

(6) Lack of National Recognition. Lyme Disease (including Chronic Lyme) has been loosely accepted by some of the medical community since the early 1980's. Unfortunately at this point in time (practically 30 years later) not a whole lot has changed. Yes, it does depend on the state that you reside in, but many places, including the South, where I spend 1/2 of the year, does not recognize Chronic/Late Stage Lyme Disease as a "real thing". Case in Point: I went to my General Practioner here in the South just a little bit ago and was told, "you are still fighting that? Honey, those people are lying to you because it doesn't exist. What test did you get done again to prove you have Lyme? Are you sure it is reliable??" And honestly, she said it nicer than other ways I have heard it put. This lack of national recognition and acceptance makes this fight a doubly hard thing to deal with. Patients are not only trying to fight for care, but often have to explain exactly what Lyme Disease is to the people who are supposed to hold knowledge (doctors). This is incredibly emotional. One of the hardest things can be having nurses or doctors who are friends. I have several lymie friends that hear from friends "it really can't be Lyme". SO discouraging and emotional for the patient. To take things a step further... there are limited walks, limited events, limited fundraising, limited commercials, limited everything because there is a lack of national recognition for this disease. 

"At a recent Lyme Disease conference it was stated that "Lyme Disease is the growing epidemic and health crisis of the 21st century and that "in the fullness of time the mainstream handling of Chronic Lyme Disease will be viewed as one of the most shameful episodes in the history of medicine.
-Praying through Lyme Disease-

(7) Physical Side Effects. Call it "vanity" or whatever you would like but the physical side effects of fighting this disease can be emotionally difficult. For example some patients lose a ton of weight and become gaunt, while others gain  a ton of weight. Some patients react to medicine with invisible side effects while others break out with extreme acne or have incredibly bad breath. Some medicines make your teeth turn yellow, some make you lose your hair (or it turns white). Your complexion is not the greatest, and your hair looses its "life". Some patients suffer from severe dry skin, while others struggle with oily skin. Yes, in the scheme of fighting for your life this is not a big deal, but as a woman these things do affect your emotional outlook. 

(8) Loss of Job/Ability to Hold a Job/ Loss of Profession. Like myself, most Lyme Disease patients are not able to work. This causes a ton of stress but also emotionally affects patients differently as they fight to figure out their "place in the world". I will never forget one time when someone said to me, "I would love to be you and get to take naps all day and not have to work." It was probably one of the most hurtful things that I have ever heard. Let me speak for ALL Lyme patients when I say that (a) I don't know one who wouldn't love to be able to have the ability to have a job, (b) Many miss their former lives/jobs tremendously (myself included!), (c) many of us don't even watch TV due to not being able to handle it or, like myself, don't like it that much and (d) Many are fighting their hearts out to get back to "normal life". This is not a vacation. We are fighting for our lives.

(9) Financial Stress. In many of my Notes from the Porch update posts I have shared that one of the most humbling aspects of this journey has been asking for financial help from friends, loved ones, and strangers alike. Until you have had to do it you honestly have no idea how humbling it is. It is simply degrading. And yet, as I explain in my post, "What is Lyme Disease?" financial resources are extremely limited for the lymie:

"Money that most patients (like myself) did "OK" with for the first five or six years of wandering the long trail of finding correct answers. But after that time period (and for some it is a much shorter time frame) money is not something that just continues to "come in". It has been spent (wisely, I would like to clarify) on finding answers, traveling to doctors across the country, treating a  mis-diagnosis, and on numerous treatments (most alternative so insurance does not cover it). ALL of these things add up to thousands and thousands of dollars. Like myself, most Lyme Disease patients are not able to work full time and those that have to struggle to survive day to day. Without a set source of income bank accounts, savings accounts, retirement funds, etc. are quickly depleted. I have been asked by hundreds of people- "didn't you save for a rainy day"? Or... "What about your savings account?". I am going to be incredibly honest here and share something very personal. I had a wonderful savings account (I was a Dave Ramsey's graduate *smiles*) that by year three of this "adventure" was being drained and then at years five and six was completely depleted. (Just to give you a slice of a picture I have spent in the last seven years approximately $54,000 on medical issues, supplies, supplements, travel to doctors, etc. desperately trying to get well!!) I, like most other Lyme Disease patients, are quickly loosing any "saved money", savings accounts, retirement accounts, etc in the desperate fight to get better. Many patients like myself have limited funds and to answer the questions that I am sometimes asked- no I do not know where the resources that I am going to need for today and the rest of this week let alone the months and years ahead (until I am able to work full time again) will come from. I am a christian who is madly in love with her savior and have learned to trust that He will always provide for me - each step of this journey. "

I shared this post last May so almost 10 months later that number of $54,000 has grown. Grown due to a thousand different reasons and I have spent in the last 10 months alone approximately $14,000 (plus the donations that have been given to my "Go Fund Me Page". Where does it go you might ask? For example this trip out to California for the necessary appointment will cost approximately $1200. Traveling to appointments are not cheap, appointments are not cheap, and everything is expensive. 

This topic alone has caused me more stress then fighting the disease itself. 

All of these items and more make up the emotional side of Lyme. Thank you so much for reading today friends! I am so excited to share next week with y'all some tips for dealing with this emotional side of Lyme! Keep fighting Lymies!
 Happy Thursday!

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