There is a silent epidemic sweeping the globe that medical institutions are failing to recognize. Meg's story is just one of thousands who are slipping through the cracks in our healthcare system. Read her story to be informed and spare yourself and your family from this life of suffering with chronic Lyme disease.

Being Misinformed Led to the Fight of My Life

*Please be aware this post contains a use of profanity.*

A few weeks ago, one of my fellow Lyme warriors and readers reached out to see if I’d be willing to share her story. Due to the nature of this illness Meg and I share, thousands of patients go without diagnosis (or are misdiagnosed) for years due to the gross misunderstanding of this disease. She and I hold the same passion for raising awareness and her piece is a powerful extension of that. It is raw, heart-wrenching and real…and an important message for us all to hear. 

Written by Meg Walling

Many people know of Lyme Disease. Maybe you’ve heard of it, or know some general information about it. You probably think you’d know if you had it, right? I know that’s what I thought. Wrong. You probably think that if you go to the doctor and they test you for it, you’re all set, right? I know that’s what I thought. Wrong.

I have chronic tick-borne diseases, generally referred to as chronic Lyme disease. But as all those with chronic Lyme know, it’s not just Borrelia (Lyme) and co-infections. It’s also a multitude of systems in your body that have been attacked and caused to be dysfunctional.

Lyme, with its screw-like nature, has the ability to invade every nook and cranny of your body. It can literally drill through – and into – whatever it desires. These complex, multi-systemic, immunosuppressive diseases corrupt and wreak havoc like nothing I would have ever imagined.

Now, imagine it.

Let me take you back, and tell you a piece of a story about a 20 year old girl. A girl that grew up with loads of dreams, a crazy sense of humor, and in love with nature and country life. Hardworking to the core, she held onto the belief that love was always the answer, and honesty, trustworthiness, and helping people was the best kind of foundation. That part of being strong meant not showing your weaknesses.

At 20, this girl should have been coming into the prime of her life…

It was December, she was just finishing a semester at college and had a wonderful trip slated for the near future. However, she got sick a couple weeks before the semester’s end, with symptoms that mimicked a viral infection. Sore throat, swollen glands, aching, fatigue, fever.

For many years prior to this, she dealt with an onslaught of sickness, each time presenting itself in the same way – upper-respiratory, fevers (boy were those fevers brutal), tiredness, and unbearable aching. The doctors would tell her it was a virus, or “You’re just going through a phase. That happens to people sometimes.” Oh, really? A phase where you’re sick every month, endlessly for years?

Anyway, I digress. If you haven’t guessed it already, this girl is me.

"All I wanted to do was have a doctor believe and validate me."

Although similar, this sickness felt a little different, but I gave it some time and then called on the doctor. Of course, “virus”, what else could I have expected to hear? The only thing is, it didn’t go away.

Eventually the sore throat got better, but everything else didn’t. It actually evolved, with my whole neck feeling swollen and hard to swallow, along with some other seemingly disconnected, random symptoms. Months went by to no avail as I saw many primary care physicians and specialists. Over the course of my illness journey, I think of this as my first bad crash.

The litany of what those doctors claimed to be wrong and what they claimed NOT to be wrong was endless. I was told I had an infected salivary gland. That I had nodules on my thyroid. That it could possibly be cancer. That it was a Hashimoto’s Thyroiditis flare. That I had PCOS.

That there was nothing wrong with me.

I traveled to local and big city doctors. I had ultrasounds done on various parts of my body; a needless cat scan; an unpleasant regimen with the steroid prednisone; several different prescription medications; and among other things, a big dose of “fuck you” from our medical system.

I had an esteemed specialist look at me, smirk like it was all in my head, and offer me a big fat nothing. Less than 10 minutes of her time, zilch of what could help my ailments, zero redirection or referral, and told me the only thing I could do was wait – that time would make it all go away. Just wait.

And that is exactly what I did – waited. Waited. All that time when I had a serious infectious disease in my body and I was waiting for time to make me better. At the time I didn’t really second guess those doctors. I mean, after all, they have years of schooling, degrees, and certifications. I believed them and trusted the system. But, I had a lot to learn.

The above is just a blip into my Lyme journey that had actually started years before, and just a speck of my long list of symptoms, doctor’s visits, procedures, treatments, and medical experiences. While I don’t know exactly how long I’ve had Lyme (over 13 years), I think that this is an important piece of my story to tell. Because I feel it was a turning point in my illness. A time when my body was trying to tell me something, and I had a chance to go up or down. To get better or get worse.

Over 4 years went by after this, where I struggled in every aspect – physically, mentally, emotionally, etc. I became top notch at hiding what was wrong and a fabulous actress. I did my best at being strong, or what I thought was strong. Deep down I knew there was something wrong, but I tended to believe the smirk on that doctor’s face. That it was just me – “Am I crazy?”

All that came to a grinding halt at age 24.

Sadly, Meg's story is one of so many others who had to fight for their Lyme disease diagnosis. It is a grossly misunderstood disease across the medical community and an all too real fight that thousands are faced with across the globe. The truth that hurts? This disease can be prevented, yet few are even aware of this. Read Meg's story and share with your loved ones to help raise awareness!

In 2013 I crashed very badly, and my life as I knew it was forever changed. Over the next year+, this mysterious illness took hold – doctors, specialists, ER visits, cardiologists, etc.…the list goes on. Paralyzed by fear and panic that was not from me, that I was unaccustomed to, and not able to control. Unable to move from the bed or couch all day, not fit to be alone, afraid of going to sleep because I thought I might die, needing someone to sit with me until sleep finally did fitfully take hold.

All I wanted to do was have a doctor believe and validate me. I wanted to cry out – “This isn’t me! This is not who I am!” What happened in 2013 was like sticking dynamite in a cave and having it explode, implode, and crumble down.

It wasn’t until 2014 that I was diagnosed with Lyme disease, other tick-borne infections, and associated issues. I like to say that I got sick very gradually and in an instant. Because, in reality, that is what happened. For years and years I very slowly declined (telling myself I needed to be stronger), and then all of a sudden everything changed, like a snap of your fingers, and the sickness consumed me.

You know the cliche, “Without your health, you have nothing?” Well, it’s not just a catchy phrase. It’s true – too true. When you don’t have your health, everything else fades away and nothing else matters. Petty things fall to the wayside and what you once thought was so important, no longer is.

What would you do if you couldn’t hold a job, go to social events, or maybe travel and adventure? Or if you were mostly home-bound, incapable of driving a car safely, too weak to wash your own hair? How about if you were unable to do what you love? If the mere life element of breathing was onerously hard? What would your life become, who would you be? This is the reality for many people with chronic Lyme.

I am not writing this for pity or for sympathy, in any way, shape, or form. After all, understanding is what we yearn for. But instead, I am writing this because there was a time when I could have been more easily treated and my life path would have taken a trajectory less towards pain and suffering. A time when I completely trusted our medical system, and believed they knew best.

Because I was misinformed about Lyme, I never gave it a thought.

Now, I know that my first symptoms and swollen glands that I experienced all those years ago are hallmark signs of tick-borne disease. The amount of times I’ve kicked myself, blamed myself, regretted, been so angry with the doctors I saw – most of which really didn’t care about my well being, and instead followed ridiculous guidelines and were led by money.

I am writing this because people all over the world are suffering from chronic illness, and most doctors just use band-aids to cover up their symptoms. Doctors are human, and they don’t know everything no matter how great they’re “supposed” to be. You know yourself better than anyone, so don’t let a doctor or anyone else make you feel like you are lacking a brain…trust yourself.

I am expressing this for you – the people that don’t have Lyme, your children, your loved ones. I want, no, you need to know the truth about Lyme disease – that it is hard to diagnose and hard to treat. Some people that catch it early take antibiotics, get well fairly quickly, and stay well. Those are the cases most hear about, and that is what most people believe about Lyme.

"In 2013 I crashed very badly, and my life as I knew it was forever changed."

The truth is that more cases of Lyme are actually not like this at all.

Most cases? They are people like me, who have gone undiagnosed and misdiagnosed for years. People that can’t just take a simple round of doxycycline and call it a day. They are people with a chronic illness, that struggle everyday just to get by. There are people all around with Lyme, but sadly enough have no idea. Lyme is not easy to diagnose. Read that line, then re-read it…then do it again. It can be mistaken for all sorts of autoimmune diseases, fibromyalgia, chronic fatigue syndrome, MS, arthritis, Parkinson’s, ALS, panic/anxiety, etc.

I am writing this because, unlike I was, you don’t need to be ill-informed about Lyme – an alarming epidemic that is not rare or uncommon. Read, then re-read that line.

I’m also telling this story for those searching for answers to their own health problems, and for those just diagnosed with chronic Lyme. I hope this gives you some sort of solace knowing that you’re not alone in what you’ve been through. It’s a fight, but it’s a fight worth battling.

And finally, I am sharing a part of my Lyme journey because of the fellow Lyme warriors that continue to inspire me every day. To open up, to be brave. We’re all in this hellish war together, and even though it’s hard not to feel alone, know that you’re not. You’re not alone.

And to that girl that grew up believing strong meant not showing your weaknesses – you were wrong – what you think are your weaknesses are what give you your strength.

To connect with Meg, you can find her on Facebook and Instagram.

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10 comments

  1. Veronica says:

    Yeah but what do you do when they have tokd you that your lyme test is neg.
    Then what? They tell you that you have fibro. You cant fight the system.
    And from my sister in laws story you spend thousands of your own dollars to get better. If that even works!
    🙁

    • Veronica says:

      Sorry. Im living like this and dont have the funds to do all that I need to to get better. So I live with the pain. Plus a herniated disc that has my pain levels worse than my fibro. If thats possible!

  2. Kami says:

    Hi Veronica. Girl, I hear you. My husband and I can’t afford to do all that is needed for my body. We have fundraised (which has helped some), but still can’t afford my constantly rising costs of merely supporting my system. Let alone treatment. I had to simply leave the mainstream system and accept that they weren’t going to help me – which was and is maddening! I’m so sorry you are struggling through this, as well as your sister in law. Sharing stories like ours is part of advocating for much needed change. It’s not fair thousands of us are living like this, as I’m sure you would agree! Thanks for reading and commenting. Sending hugs your way and much love.

  3. Meredith says:

    Oh, this reads like my story and that of so many of us with chronic illness! As someone who was born with Hypermobile Ehlers-Danlos Syndrome (a “rare” genetic connective tissue disorder), and who has struggled with numerous issues since birth but was only diagnosed at age 44, this is my story too. As someone with a list of diagnoses that takes up a full page, including just recently diagnosed Lyme and numerous co-infections, this is my story.

    It’s the story of being told over and over since I was a toddler that it’s anxiety, it’s growing pains, that it’s “all in my head,” that if I stopped being stressed out, I’d be fine. It’s the story of being told if I lost a few pounds (at age 16 and approximately 130 lbs and 5’5″) I’d be all better. It’s the same story of knowing in my soul something was wrong for years, but discrediting it and believing I was going crazy because of doctors and family and friends who kept telling me I worry too much. It’s the story of finally realizing that the medical community wasn’t serving my needs and turning to the internet for answers. It’s the story of hearing from my PCP that I should stop looking there because, “We can believe anything we read, now, can’t we?”

    I’ve been asked by a doctor, “Do you think you’re just making yourself sick because you’re afraid to be happy?” I’ve watched the smirks shoot from one doctor’s face to another when I get frustrated that I’m not being heard and tear up. I’ve had social work and psych consults when what I really needed were accurate tests, knowledgeable doctors and nurses, and a touch of compassion. Oh, I could write a book…

    So Meg, your story speaks to me, and I thank you. I thank Kami for putting your writing out here. It’s honest and raw and it is OUR story – that of many of us – even if we don’t have all the same illnesses or circumstances.

    Yet my hope for all of us is that the story isn’t over yet. I may rarely be able to leave my bed, but I work at educating every doctor who will listen. I target the nurses, interns, residents and younger doctors, because they are the ones who are most likely to listen and who will hopefully change our healthcare in this country. They are the ones I pray will learn that their patients are people first and foremost, that we KNOW our bodies, and that our stories are worth hearing and puzzling through.

    I’m sure my friends on social media are tired of my “awareness campaigns” – every month a different disease (or two or three). But since I can’t work anymore, this is my work. I think it is up to us to let our stories be heard. It’s scary and it feels unfair that we have to teach the experts and the general public alike, but we do. Thank you for sharing your story! It was brave to do so!

    • Kami says:

      It breaks my heart how many people sit in agonizing waiting, passed from one disbelieving doctor to the next. I’m simultaneously grateful for those who have found their Lyme diagnosis and pained that others have to live this life. Really the life of any chronic illness. Sending hugs to you Meredith. Thank you for sharing your experience here

  4. This sounds so very much like my own story. I have been sick for many long years. Yet, I was just diagnosed this past March. Like you said, Kami, I had to leave mainstream medicine behind and finally got my diagnosis. Thank you for sharing this story. xoxo

    • Kami says:

      Our stories all seem so similar – waiting so very long to be correctly diagnosed. Hence the reason we will continue to share our stories in some capacity. Always hoping and fighting for change in a twisted system. Sending gentle hugs your way, Valerie. Always love hearing from you

  5. Brittany W says:

    I was diagnosed with anxiety for years before they figured out it was actually a heart problem making me pass out, not “panic attacks.” I was diagnosed with growing pains for years before it was discovered that I have a rare genetic disorder. There’s nothing worse than being brushed aside and consistently misdiagnosed or ignored.

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