Caravan Sonnet: 9 Things I Have Learned From Lyme Disease

5/17/18

9 Things I Have Learned From Lyme Disease

1. Life Truly Feels Like It Is "On Pause" In Every Aspect
I can't even begin to count the thousands of times that people forget that I have had to give up my career, my independence, my life to fight this disease. Absolutely everything has been put on hold and it is one of the most difficult things to deal with in this journey. This reality actually inspired me to write When Truth Refreshes (found HERE) because of the myriad of emotions that come from this aspect alone. 

This time of year (and many times of the year) brings up a ton of different emotions as my social media feeds are filled with pictures of all of the graduations, wedding announcements, baby announcements, summer plans, etc. Like many Lymies it can often feel that our lives are on a constant pause button. In that though I have learned a deeper gratitude for the beauty in life... the beauty of now. 
The beauty of savoring the moments that are right before me and living them fully. 
The beauty of loving those that are right in my life.
The beauty of having deeper relationships than I ever knew because Lyme has a way of stripping off the "pretend" and getting to the heart of the matter. 
The beauty of living vulnerably and freely with no expectations. 
The beauty of believing the impossible for each day. 

This is a gift that I never want to forget as I continue to heal. 

2. Healing Doesn't Happen Overnight and It is NOT a straight line.
Before Lyme my experience with being sick is that when you have an infection you feel poorly, you take your vitamins, supplements, oils, etc. and if you choose the prescribed medication and withing a day, week, or sometimes a month, healing comes. Healing takes place quickly and many people start complaining if they have felt sick for more than two or three days. 

Lyme has taught me that the complete opposite can be true. Healing doesn't happen overnight and it is a complex fight to deal with all of the issues that Lyme has caused as it can wreak havoc on so many different parts of the body. It's complex. It's tiring. It's exhausting. And it is an all out fight that you are in every single minute and hour of the day. And there is nothing simple about that. (You can read more about my thoughts on the long and winding road to healing by clicking HERE.)

And in this I have learned that all of life is like that... the journey is long and it lasts a lifetime. There is nothing quick or simple or straight lined about a person's life. I read this quote the other day and shared it with my IG community and it has stuck with me in profound and deep ways:

"Making someone feel loved in an instant is so much easier than showing someone your love over and over, day in and day out. It seems to me that one of the greatest hazards is quick love, which is actually charm. We get used to smiling, hugging, bantering, practicing good eye contact. And it’s easier than true, slow, awkward, painful connection with someone who sees all the worst parts of you. But quick charm is like sugar - it rots us. Only love feeds us. And love happens over years, repetitive motions, staying, staying, staying. Showing up again. Coming clean again, being seen again. That’s how love is built."

That... yes that... is the deep kind of love I long to take with me for the rest of my life.
3. 95% of People You Know Have No Idea What Lyme Disease Is Before You Got It. 
Even though there have been more people talking about Lyme Disease in 2018 than even since my diagnosis in 2013, 95% of people that I know didn't know what it was before I started sharing my story. In response to this I wrote and shared a basic post entitled, "What is Lyme Disease?" a couple of years ago (and have updated it this year which you can find HERE) that remains one of my most read posts of all time. 

With this though comes a complex situation that develops. I have been very vocal about this (to the dismay of many of my Lymie friends that I know *smiles*) and it stands true. Because of this lack of knowledge the healing journey is complex and isolating. On one hand I long to have all of the energy in the world to be the biggest advocate for Lyme Disease, but on the other hand... well...the hard truth of the matter is that I don't have that energy to do all of that advocating or the passion for it. 

This is complex for Lyme patients- we want to shout it from the rooftop about the disease, and yet just keeping track of all of the pills, supplements, meds, and life that needs to take place each hour doesn't allow us to do that always. 

Over the years I found what has worked for me... writing for me is my advocacy point. I have also done speaking on Lyme and sharing my story. Talking and listening to those in my circle is my advocacy ... for the Lymies. For others it is taking on congress and changing laws. I love that. I love that each of us have the opportunity to walk this complex road individually and uniquely. *smiles*

And in this... perhaps Lyme Disease has given me the greatest lesson... life is to short to say "yes" to everything. Choose what is important and what you are going to invest your time into because life is short.
4. Many Doctors Don't Believe that Chronic Lyme exists and are Not Aware of the Complexities that come with it.
Before I got sick I used to watch some medical shows off and on with friends and marvel at the way the doctors would treat patients with "rare and misunderstood diseases". Before I got sick I was convinced that doctors knew pretty much everything in their field. After my diagnosis I have not watched one medical show and learned that doctors sometimes don't know everything. Let me tell you - it is not fun to be the patient sitting in the office where the "experts" on health don't understand your disease, where you have to explain how a certain medication will cause a herx reaction, or tell them that "no, this is not all in my head". 

A quote that I mentioned in the forward of my first book and that has brought me to tears sums this point up well: "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". 

Amen. Amen. Amen.

I think that this has taught me a huge lesson in general in my life. Words are so powerful. We have the beautiful opportunity to recognize all of the hurtful and "death words" that have been spoken over us in this journey and choose to spread the opposite: to speak life-affirming words into each person that we encounter. I want to take this with me for the rest of my life. 
5. Lyme Disease is the Loneliest Battle You Will Ever Fight.
"Recovery is not a team sport. It's a solitary distance run. It's long. It's exhausting. And it's lonely as hell." 

Fighting Lyme Disease is the loneliest battle you will ever fight. Even with a great support team you have to face the monster day in and day out- doing something every hour or more to fight, and it is incredibly lonely. It is days upon days upon days of being in bed, being in your house (where moving to a different room can be a huge accomplishment) and days upon days upon weeks upon years of fighting a serious and determined killer. It's a solitary distance run... a marathon that you never wanted to run or trained for. It's incredibly long. It's physically and emotionally exhausting. And it's lonely as hell. 

There is something deep and refining about facing loneliness though. There are lessons that I have learned in this season that could never have been replicated in a season full of people all around. These lessons have shown me the worst about me and I have grown up. Not just age wise, but in deep heart ways that only a season of loneliness can teach you. Dietrich Bonhoeffer said it well... there is a season for togetherness and a season for being alone. It's a challenging and lonely wilderness that most want to escape and run from. This journey teaches you to not run away from the hard but to face things with courage and without fear.
6. People Can Say the Most Insensitive Things
I can't even begin to start to list the thousands of insensitive things that I have been told throughout this journey ranging from: "It must be nice to not have to go to work" or "It must be nice not to have to ever leave summer you have it everyday of the year" or "I am tired and you don't see me complain about it" or  "I wish I could just lay around and watch TV" (a thing to do that those who know me well know that I don't like to do) or "you just need to exercise more" or "if you just tired this... (insert oil, supplement, antibiotic, pill, etc.) you would be better" or "Why aren't you better yet?" or "You must just not have enough faith to be healed" or "What is the name of the disease you have again? Lame Disease?" And the list goes on and on and on and on... 

I honestly had no idea how insensitive and hurtful people could be until I got sick. At a time when I thought people would surround, encourage, and rally around me, I have received so much skepticism, hurtful and rude assumptions and comments, and lack of support from those that I truly thought were close friends. I shared a little in my post, "after the diagnosis", but the truth is that this is a sad but realistic part of the journey. 

But here is what I have also learned...

7. There are Unexpected Blessings of Illness
While it is true that I have had lots of friends walk away and been very unsupportive of my journey, I can also say without a doubt that I am incredibly blessed woman and my cup truly over runs with the way that God has blessed my life with amazing friends and family support. 

Fighting a serious illness like Lyme leaves you incredibly vulnerable to the relationships that you have in your life because you have nothing to offer. You aren't well enough to do things that you might have done "normally" before (like attend special events or birthday parties). You aren't well enough to often remember the days of the week let alone remember important days in others lives (like birthdays, anniversary dates, etc.). You often don't have the strength for regular phone conversations (or meeting for coffee). And you often are trying to use every single spare energy you have to get better that "real life" disappears into a "fog" of "what was". 

You learn in a heart breaking and startling way the reality that the many of the relationships that you have were built on what you have to offer another person instead of love. And the sad reality is that many, many, many people walk away when you have nothing to offer.

 A sweet friend of mine who is fighting Ovarian Cancer recently asked me if I thought illness caused division and was the cause of people leaving. Over the years I have contemplated it , and the truth is that I don't think it is. Yes, illness is messy and hard and filled with tons of pain and yuckiness. BUT. I truly believe that illness just shines a spotlight on the issues, the reality, and the character of who we are and those that we are friends with. I truly believe that if it wasn't the situation of illness that caused the "fracture" in relationships, it would eventually be something else.

BUT in the midst of all of that, there are unexpected blessing of illness if you look for it. In the midst of the difficult, the messy, and painful, there emerges a group of people that become "your family" and "your tribe". These are the people that instead of walking away when times get tough they continue to love on you even though there is absolutely no benefit and no gain for themselves. They quietly and sacrificially love you, walk with you, and model what a healthy relationship looks like. They are the unexpected blessing of illness and I have realized that even more than before I am a very blessed woman. (You can read more about the unexpected blessings of illness in this post HERE.)

And here is what I have learned in deep ways as I have begun the healing journey. I love more openly and freely then before Lyme. The sentiment "wild and free" has a whole new meaning for me beyond a pinterest saying. I have learned that letting go of expectations of how someone will respond is the most beautiful thing in the world. 

Love given freely will never come back without a person being changed. Keep pressing on, keep the faith, and live in the beautiful hope of loving someone freely.
8. The Financial Cost to Fight the Disease will Drain Every Resource that You Have. 
I shared more in my post, What is Lyme Disease?, but this aspect is the most stressful thing about the entire journey. From it stems hundreds and hundreds of issues that are overwhelming. 

Lyme Disease patients worry about things that most people don't think about. I will debate for hours and hours each week on which supplement or antibiotic I should do "without" due to money. We have concerns and stresses that are impossible to explain. We have sold everything we can think of, have had to humble ourselves to ask for money and are embarrassed to admit we have done so, and have asked every family member, friend, and stranger for help. In the process most of our relatives and friends have depleted their savings accounts and bank accounts to help us. Let me say what most Lyme Disease patients are thinking about all of the time but are ashamed to admit:

We don't care about the battles of politics and insurance. We don't care about "which treatment" is supposedly the best. We don't care about "this or that". What we do care about is fighting for our lives and our health and most of us are so scared that we can never get better because we do not have financial ability to do so

And here is what I have learned...a simple and yet profound lesson: to watch for the miracle of provision each and every day.

(side note: If you are a Lyme patient and looking for financial tips and resources I wrote a blog post about this topic that you can find by clicking HERE.)
9. Fighting Lyme Disease Will Change You.
Even when you heal you will have changed too radically - physically or emotionally to ever go back to what you knew or were before this fight... and that is the deepest lesson I have learned. 

I truly believe that Lyme Disease has changed me in the best possible way and it can if you let it. We have the opportunity to become more compassionate, loving, brave, courageous, free, and more giving people then we were before. We have the opportunity to become a better version of who we were before we entered this fight. Physically, emotionally and spiritually I look back as I enter my 6th year of living at home and see that I am a different person... I have fought for who I am and I realize that I am loving this person I am becoming. 

Lyme Disease has not defined me... but it has been the greatest teacher and for that I am forever thankful for all of the lessons above.

2 comments:

  1. Thank you for sharing your story today in Burlington.

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    1. You are welcome! Thank you for leaving a comment! :) I hope you have a wonderful week!!
      Blessings, Rebecca :)

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