Caravan Sonnet: 9 Things I Have Learned From Fighting Lyme Disease

9/18/15

9 Things I Have Learned From Fighting Lyme Disease

1. Life Truly Feels Like It Is "On Pause" In Every Aspect
My beautiful and talented friend Jenny from "The Lyme Road" wrote a wonderful post on what it feels like to live with Lyme Disease. The title alone was so powerful ("A Life on Pause") that it actually took me over a week to read the article. This article articulates in perfect and haunting ways what I and others who are fighting this illness deal with every single day. I can't even begin to count anymore the number 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. (You can find the article by clicking HERE.) 

2. Healing Doesn't Happen Overnight and It is NOT a straight line.
When you have strep throat or a basic infection you feel poorly and you take a prescribed medication to get better you start feeling better within a day, week, or sometimes a month. Healing takes place quickly and many people start complaining if they have felt sick for more than two days. Lyme is completely the opposite: 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. (You can read more about the long and winding road to healing by clicking HERE.)

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 2015 then in previous years, 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?" that remains one of my most read posts of all time. 

4. Many Doctors Are Not Aware of What Lyme Disease is, Don't Understand its Complexities, and Many Don't Believe that it Exists. 
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, and tell them that "no, this is not all in my head". 

A quote that I mentioned in the forward of my 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". 

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. 

It is in that space that I find that God meets me each and every minute, every hour, and every day so that no matter how many days and weeks of fighting I am reminded that I am never truly alone.

6. People Can Say the Most Insensitive Things
I can't even begin to start to list the hundreds 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 "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 and encourage, 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. 

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 the Lord 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 realize with startling 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. I have thought about it for a while, 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 have been something else eventually. 

BUT in the midst of all of that, there is an 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" or "your team". 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 nogain for themselves. They quietly and sacrificially love you, walk with you, and model Christ's love beautifully. 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.)

8. The Financial Cost to Fight the Disease will Drain Every Resource that You Have. 
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 one or two  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 eight and 1/2 years approximately $90,000 on medical issues, supplies, supplements, travel to doctors, etc. desperately trying to get well!!) I, like most other Lyme Disease patients, have lost 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. 

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.  (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.
The length of your recovery is determined by the extent of your disease and the reality is that it is not always successful in complete recovery. No matter how hard we work to heal ourselves, some of the wounds and issues that Lyme has cause might never fully and completely heal. For a while or for a lifetime some of the physical ramifications of Lyme Disease might exist and you may have to adjust to a whole new way of living. Even when you heal you may have changed too radically - physically or emotionally to ever go back to what you knew before this fight... and that is okay. I truly believe that fighting Lyme Disease can change us in the best possible ways. We have the opportunity to become more compassionate, more stronger, 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 finish my third 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. Fighting Lyme Disease has changed me... in the best possible way.

8 comments:

  1. You are amazing. I agree -- it's NOT a straight line. That is so applicable to so many different things! Thanks for sharing friend!

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    1. Aww friend. Thank you so much for your encouraging words. I don't feel so amazing... the Lord is so kind and gracious and merciful and gentle in this journey. AND yes, DEFINITELY NOT a straight line. hahaha. :)
      Blessings, Rebecca

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  2. Thank you so much for sharing this! I have heard that living with chronic pain is exhausting, but I've never been able to see a glimps of why or what that means. Thanks for being brave here. xoxo praying for you!

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    1. Britanny, Thank you so much for stopping by and leaving such a sweet and encouraging comment. It is true that living with chronic pain is exhausting and I appreciate your words. Thank you so much for your prayers and your kindness! You truly touched my heart today!
      Blessings, Rebecca :)
      p.s. I would love to have emailed you back directly but unfortunately you are a "no reply blogger". I hope to connect with you more in the future!

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  3. You are so brave, it must be awful to fight a battle so few understand. I can't believe some of the awful things you've had people say to you! But then again, I am not surprised at all. Best of luck on your difficult journey, and thank you for sharing the details so that others like me, might learn to understand. <3

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    1. Amanda, Thank you so much for stopping by and sharing such an encouraging note! Thank you for your words! It is true but sad what I have heard said over these years (and many more things not mentioned) but there has also been so much encouragement and love over the years too. :) Thank you again for stopping by and commenting!!
      Blessings, Rebecca :)
      p.s. I would love to have emailed you back directly but unfortunately you are a "no reply blogger". I hope to connect with you more in the future!

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  4. You are a beautiful woman who is brave and courageous, and I loved your thoughts here. I have recommended your book to many friends who know someone struggling with Lymes! Thank you for being such a lovely voice in this world!

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    1. Thank you Katie for your sweet and encouraging words! AND thank you so much for sharing my book with those that are struggling through this difficult journey with Lyme Disease. I am grateful for your sharing and hopeful that they find the book encouraging during their journey! Thank you again for your words and for stopping by and taking the time to comment!
      Blessings, Rebecca :)

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