*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.
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.
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.
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.