Chronic Lyme Disease is confusing. It’s confusing to the general public, to family members, to friends, to medical professionals, and even to its victims. The frustration of not having clear answers regarding treatment and remission is real. The misunderstanding of what Chronic Lyme Disease is and why people don’t think it’s real is real. The confusion of the pure complexity of the disease and how people get it without actually knowing is so freaking real.
Yes, Chronic Lyme Disease is devastating in a physical aspect. Bodies become weaker, joints begin to swell, movement becomes impossible, extremities feel like bricks. Constant pain and pressure invades the body. Physically, Chronic Lyme hurts. So many people hear about the physical symptoms of the disease; the fevers, the chills, the night sweats, the headaches, the constant aches and pains, the chest pain and shortness of breath, the unrelenting swelling, the dizziness and paralysis, the blurry vision and tremors. The physical symptoms are talked about pretty openly. But, there is another side to this devastating disease. The psychological side.
I don’t mean Lyme Disease victims are psycho, though some of us lose our minds at times (wink, wink). We are mentally challenged with a physical obstacle that is so frustrating, our doctors don’t even know what to do sometimes. Don’t you dare try and tell me that that isn’t a mental hurdle.
Neuro-Lyme is a thing, and it explains all of the neurological symptoms that go along with Lyme. Neuro-Lyme symptoms include dizziness, paralysis, hallucinations, memory loss, anxiety, depression, forgetfulness, brain fog, insomnia, ringing in ears, vertigo, lack of focus and concentration, mood swings, disorientation and seizures. These symptoms aren’t talked about as much because, often, people are afraid to talk about psychological problems. People are scared of the words ‘depressed’ and ‘anxious’. People are too prideful in their strong façade and don’t want to show vulnerability. Though neuro-Lyme isn’t talked about the same amount as physical Lyme, many people who have physical Lyme, have some sort of Neuro-Lyme as well, whether they acknowledge the problem or not.
The point to writing this is to bring awareness to the mental challenges we, Lyme victims, face everyday. Neuro-Lyme is a real thing, and it’s often overlooked when talking about Chronic Lyme Disease. People are put on antidepressants to make the depression or anxiety go away, but really that’s just hiding the problem even more. Dealing with the root cause of a symptom is the key to making said symptom disappear. If you keep adding drugs to your symptom, you’re only adding more problems to the situation. Neuro-Lyme is no fun, it causes depression and anxiety, as mentioned above. Our minds go off on tangents and we can’t focus on the task at hand. When Lyme invades one’s mind, it sets us up for negativity and self doubt; we put ourselves down and think we aren’t good enough or strong enough. Even if one doesn’t have ‘Neuro-Lyme’, one can still feel defeated, sad, angry, and upset.
NEWS FLASH: If you are not mentally healthy and stable, it is nearly impossible for your physical health to get healthy. Think about it, when you want to go work out, half the battle of working out is convincing yourself to put on your tennis shoes and take the first step on the treadmill, am I right?
Lyme Disease is extremely destructive and brings people to dark places, mentally. Keep in mind, these people may have anxiety or depression, but they do their best. Lyme disease reveals deep secrets and shows itself in ugly ways. Half the battle of Chronic Lyme disease is the mentality to keep fighting. We need people in our lives who will support and love us, no matter what. We know that we aren’t alone, because we have this Lyme community, we call ourselves Lymies. We know that we sink deep into holes sometimes, but we also know that if we get together, together we can fight. Lyme disease destroys our bodies and brains, and sometimes our attitude gets thrown down with it, but that’s not the part that’s talked about. When our emotions and thoughts are disregarded, we feel as if our entire fight is pushed aside, like we don’t matter. We need to shine a light on the mental health issues that Lyme Disease causes.
Tayler Bender says, “I think a lot about feeling like, ‘this is it for my life, feeling like I’m never gonna get a future and I’ll miss out on everything…'” She continues, “Fighting through the same thing day after day without the slightest improvement, it starts feeling pointless and leaves me feeling so exhausted. All I can do is cry sometimes.”
Some negative thoughts that Lymies have:
“I am not good enough.”
“I am breaking each day.”
“This medicine makes me look sicker, therefore I am not pretty.”
“This is my future. I am not worth anything more than this.”
“The seams of my life are ripping and my friends don’t understand.”
“Nobody loves me and nobody sees me as me anymore.”
“What happened to me? Where did I go? I am totally lost.”
“I am so alone in this fight. My friends don’t get it and they won’t even listen to me.”
“I just want to be embraced in an all loving hug. Why don’t I feel loved?”
“I just want to give up. This has gone on too long, and each new treatment fails.”
“Was this what I was made for? Was my life supposed to be spent in bed, alone?”
“I wish I could be doing ____ right now.. I wish I was strong enough for that.”
“I hope some day that I can be the one running, instead of riding.”
“All I can do is cry.”
Destructive, yes. But, Chronic Lyme Disease teaches us so many life lessons about gratitude, love, faith, hope and community. Lymies may have dark places and sad thoughts, but we are strong and we strive to be positive. We work hard to stay positive and we know that no matter how negative we get, every positive thought that comes through will always stand taller and brighter.
Positive thoughts from the Lyme community:
“Thank God I get to be in my own bed, instead of in a hospital bed.”
“I am worth the fight, my mind is worth the fight, my future is worth the fight.”
“I’m stronger than I realize, I am more beautiful than I see, and I am kinder than I know.”
“I have friends and family who love me and who will listen and support me.”
“I am beautiful.”
“I am smart and I have so much waiting for me.”
“I am talented in so many ways.”
“I am excited to see what’s in store for me.”
“I have faith in myself. I have faith.”
“I will keep fighting. I am strong enough for this. I am worth it.”
“I am enough.”
“I won’t give up.”
“It’s okay not to be okay, but I just need to smile.”
I know that I am worth it, and I know that I am loved, unconditionally. But, sometimes, Lyme just hits so hard that all you do is cry. I know that I will not sink. I know that it’s okay to not be okay, all the time.
Though each Lyme story is different, nearly all of us can relate to each other in some way at some point in time. Emotionally, our battles are more similar than different. We know how frustrating it is to be misunderstood. We understand how upsetting it is to not be believed by our very own family members. The emotional mess of Chronic Lyme Disease has a name, and I would like to bring awareness to it. Lyme disease is rarely talked about, and many people with a mental illness may find relief in knowing there is a root cause, other than their own brain. Some are wired with those mindsets, but others develop those mindsets. Lyme presents as, and progresses into depression and anxiety. It is our job to shine the Lyme light on this issue.
Bringing awareness to an issue isn’t always glamorous. Bringing awareness to an issue is being raw, detailed, and real. Help me bring awareness to the emotional side of Lyme by sharing this blog post with anyone you know, with or without Lyme.
Have you ever heard of Ally Hilfiger? Tommy Hilfiger’s daughter? Yeah, she was checked into a psychiatric ward when she was 19 because she went ‘crazy’. Turns out she just had Lyme disease. This short interview with Ally outlines the reality of the disease. Read more about Ally’s journey through life as Lyme warrior here.
To read more about what exactly Neuro-Lyme is and how to recognize it, click here.
The LymeLight Foundation is a great foundation that helps families to get Lyme treatment. Consider donating, or adding their organization as your AmazonSmile donation.