There is a divide within the "Lyme world." There are those who refuse to associate with Lyme, call themselves a Lymie, or define themselves by there illness. Then there are those who 100% define themselves by their disease and would consider nothing else then to be called a Lymie.
I understand both sides. When you are so sick you can't even lift your arm because of the pain, you feel so incredibly lost that you don't know what else to associate yourself with other then your disease. I think some people are just more positive about the whole situation or they have many other things to associate themselves with or they have an amazing support system or they've been lucky enough to where they haven't truly suffered. Whatever the case may be, I get it.
I call myself a Lymie but I fall somewhere in between the two extremes (as many do). So why do I associate with my illness? Because it IS part of me. At least for right now. It doesn't define me but it sure as hell feels like it tries to. I associate with this illness because I feel an obligation to. What I mean by that is this community of Lyme-fighters 110% needs advocates in the world. How many people and doctors don't believe in chronic Lyme disease? How many sick patients are out there without a proper diagnosis? How many of us who ARE diagnosed are STILL suffering? I define myself as a Lymie to make a point. To let the world know I have suffered, I am suffering, and I will continue to suffer until progress in the medical community is made. I do it to let the world know there are 100's of others just like me, worse then me, SCREAMING for help and relief and progress.
I spent years in pain and sick, searching for a diagnosis. So yes, I am a Lymie, a Lyme-warrior, a Lyme-fighter. I want the world to know how hard I have fought the system to get a proper diagnosis, to get my health back. I want the world to know how much of a battle this disease is BECAUSE of how abused and corrupted our medical system has become. I want people to know how much I've suffered. Not because I want pity, but because I want people to understand how much this "easy to treat and hard to get" disease can take from your life!
I don't call myself a Lymie to make people feel sorry for me or to feel sorry for myself or to drag myself into the depths of this disease (although sometimes I go there, don't we all?). I do it to make a point. To bring awareness. To support others in this battle. I've put up one hell of a fight to get where I am today and I want everyone (especially the medical community and insurance world) to know that. To know how brave people with Lyme actually are. I want to be the face, the voice, the advocate for those who can't work, who are bedridden, who have lost friends and family because of this illness. Lyme isn't a joke and it can't be treated with just 2-4 weeks of doxycycline.
Do you call yourself a veteran because that's all you associate with? That's all you are? No, you do it because it's a huge part of your life. You fought a giant battle and you probably have scars or medals or insane stories to show for it. We honor you for your bravery. Well, I fought a damn huge battle myself. Against my own body. Want to see the scars? Or hear the stories? I have them. You can call me a veteran if you want, I've been brave enough to keep fighting this battle every single day and to keep myself alive through it all. Lyme disease is a large part of my life, every day revolves around treatment and pills and how I feel. It doesn't define me but it IS a huge part of who I am, how I've gotten to where I am today, and what I've learned.
I'm not saying you should fall into the trap of your disease or only associate with the negatives in your life, but if you have a chronic illness, it is part of who you are. It's okay to connect with it, to identify with it. Sometimes that can make it easier to understand and live with, rather then trying to continually push it away and make it this foreign, frustrating thing that has taken you over. Accepting your illness is important for recovery, it allows you to come to terms with it, acknowledge it, and figure out how to move forward. I am still working on this, it isn't easy. The more I've tried to push it away, the harder it is for me to mentally cope because I become angry at Lyme (which is totally okay to do, too) rather then work with it. And those negative emotions towards your disease can actually make it worse and cause flares (anger is a type of inflammation in your life and Lyme feeds off inflammation. Lyme also looks for any moment to pounce and when you are sad or upset or negative, it can weaken your immune system and allow Lyme an opening). I am coming to terms with Lyme by acknowledging I'm a fighter, a warrior.
I AM a Lymie. I'm proud of it. I stand up for everyone else who is suffering. I'm making a point.
Why do you call yourself a Lymie (if you do)? Let me know in the comments!
The Person Next to You says
All three of us have that same pill box. With probably as many pills. And tinctures. And oils. I hate that any of us live like this.
Don't call myself a Lymie, only because I always think of it as a term that British people are called... I'm a Lyme patient. (for now)
Patty Sullivan says
I love this topic of discussion. I use the term "person with Lyme" as I work in special ed and we are indoctrinated to not label a person as LD, DD, Autistic but that they are a person first and foremost, and they have a special profile which grants them adaptations, accomodations and modifications for learning.
I also don't want to identify too strongly with this disease, perhaps its denial, but I almost see that it is in my body but not a part of me. That it is something that I am engaged with in my life at this time but that it will not always be so.
At least that is my hope. I am manifesting all good things, health and otherwise daily while I take all the meds/supplements/treatments. I'm covering all bases in order to maintain my mental health.
Stay strong friends, we will overcome. Patty
Lemons 'n Lyme says
Some excellent points! I really wanted this post to open up an honest and real conversation… Thank you for sharing.
It can be very hard to maintain mental health when dealing with such an illness as Lyme, but it is incredibly important to do so. I'm glad you work at that daily. I am still working on that! 🙂
Miss Diagnoses says
Well said! Loved every word! I definitely call myself a Lymie because I am part of this community! Wishing bad experiences away by refusing to admit any negativity doesn't work (especially when it comes to spirochetes that are known to stick around!). Plus, as you said, the second you get diagnosed you have to become an advocate because of the attitude of the mainstream medical community. I think it is empowering to say "Lymie." One day we will be acknowledged, and I can't remember which famous person said that one day the handling of Lyme disease will go down in the medical animals as one of the most shameful episodes in medicine. I believe we will have our day and I also believe I owe you an email LOL ... Hugs!
Lemons 'n Lyme says
Oh yes, it will definitely go down in history as handled terribly! Thanks for the positive feedback on this post and for being awesome yourself ;). YOU DO OWE ME AN EMAIL! Ha, but I understand.
J. W. Kain says
I think your blog has the best name I've ever seen. This is great!
Lemons 'n Lyme says
Thank you! 🙂
peppermintfrost says
Did you find success from IV therapy? I was on antibiotics for 2 years and I had crazy side effects to all of them. (I was on docycycline, tetracycline, biaxin, ceftin, ad mepron). Now I hope for herbal supplements instead (cat's claw, andrographis, resveratrol, fish oil, glucosamine chondroiton, etc). But I think my body is getting used to the herbs. My symptoms are back and I can't seem to get rid of them for more than 2 weeks at a time. I can see that you eat very healthy, so I was wondering your thoughts on mainstream antibiotics. I hated them so much, but right now I'm not sure if the natural stuff is enough.
Lemons 'n Lyme says
The abx definitely helped a lot when I first got REALLY sick, they saved me. IV helped with brain swelling and some cognitive issues but that didn't last once I came off of them. But I was on them too long and feel they had negative effects towards the end. I feel abx have their place and time in certain situations but they wreak a lot of havoc, too. It's a tough decision and I believe in the power of natural remedies but you have to find the right protocol for you and sometimes they aren't strong enough. Cat's claw seems to be the only herbal "antibiotic" you are on so it might not hurt to look into some more herbs or natural protocols to help aid your healing process. I hope this helped at least a little. Sending love and healing!
peppermintfrost says
Thanks! Yea, my experience with regular antibiotics was just awful. I had so many side effects, so I'm trying to avoid them, but now I've been sick for a while and I just don't seem to be improving at all anymore.