16 Lessons I've Learned From Having Chronic Lyme Disease for the Past Year
2016 was one of the toughest years I’ve ever had. I was diagnosed with chronic Lyme disease in January after two years of unexplained severe symptoms.
I was a full-time occupational therapy student and a part-time yoga teacher. I was just like you, going to work every day, wanting to be doing some good in this world and living a normal late-20s life.
I had no real education on Lyme disease, like most of society. So when I got too sick to drive, participate in school or lead a yoga class, I was blindsided and completely debilitated. I had to watch my old life die in ways I never thought possible. This Lyme journey wasn’t chosen, but it’s what I was dealt with.
With time, anything and everything changes. I still haven’t found the right treatment after trying different antibiotics, which caused extremely bad reactions for the past year. I’m still disabled. But I’m now a published writer, closer with my parents than ever and met my soul mate. I’m sicker than ever, but it’s the happiest I’ve ever been.
Confusing right? Welcome to Lyme disease!
Before the New Year and my second year as a Lyme warrior begins, I want to share with you my deepest reflections and lessons from this incredibly hard yet enlightening path.
1. People react to Lyme in a myriad of love and fear. Some will take you in and stand by your side during this battle. Others will cast their fears at you, leaving that bitter long-lasting sting. My lesson is a practice of acceptance. Humans will do as humans do, and I can’t take responsibility for anyone’s actions but my own. People will innately want to live in a reality that works for them, so casting a sick person as unbelievable or selfish gives them enough of an excuse to disappear. I was so naïve to this, but now it’s a haunting pattern in our community.
2. Some days, the terror of the unknown feels beyond this world. It’s changed me. I don’t see days as I used to. In the past, I’d run from bed to work, drink coffee and try to fit the most into my day as possible, while missing so much of the joy of the present moment by focusing on a somewhat superficial and petty social life. Having a good day now is monumental, and I now soak it all in, allowing the memories to linger for days, weeks and months on end.
3. Communicating while experiencing pain is a skillful art I haven’t perfected yet. When the neuralgia (nerve pain) kicks in at any given time in any part of my body, it’s like living with a ticking time bomb. Sitting through true pain, when there is no help or prognosis, is some Zen-like ninja business. “You are not the pain” and “The pain will go away at some point” are just your usual Lyme warrior mantras.
4. Trusting any medical professional is fairly difficult for me now. I’ve seen the true damage caused in my body by poor medical expertise. I have to properly vet new doctors with questions on their Lyme knowledge. First off, are you aware my disease even exists? Next, do you believe after two years undiagnosed and one year of treatment, all I need to get better is a month of antibiotics, a trip to the psych ward or some unheard of energy work? Third, do you think I’m dramatic/a know-it-all/depressed/liar/overall difficult patient that can be dismissed easily?
5. Social media is a double-edged sword. One moment you’re soaring high, and the next you’re spiraling down. By having such a misunderstood disease, the only people I trust are my friends I’ve met online who are going through the same thing. This is a great way to connect, share your experience and know you’re never alone. On the flip side, there will always be pictures of people doing things you can’t do. I’m not sure that will ever not hurt. So it can feel like self-inflicting pain after a while. My lesson is to know when to unplug and keep my thoughts on what’s really in front of me.
6. Don’t gloss over that having a debilitating, life-changing monster of a disease is OK, especially for other people. If they understand or not, you have the right to be honest when asked, “How are you?”
7. Pet therapy is a true life saver. I have two cats who are with me at home all the time. When I am having the darkest moments, they’re there to protect me, calm me down and cuddle with. Without sharing affection in a nonjudgmental way, I’m not sure how my sanity would be doing right now.
8. You don’t have to stop dating. There are people out there who will find happiness within you and vice versa. You still have so much to offer. The disease is not your identity, and if you stumble upon someone who isn’t supportive of your health condition, then it’s just not a match! Plenty of fish in the sea. If you don’t believe me, I found my soul mate this year, right in the middle of the storm. Although I’m so sick every day, I’ve never been happier.
9. I learned how judgmental I was, even though I was truly convinced I wasn’t. I’m a yoga teacher, love diversity, well-traveled and educated and working on a career in occupational therapy. But I was judgmental as hell and am still working on it.
10. When I was thrown into the burning fires of true discrimination, I finally the direct effects for the first time. I’ve been stigmatized by doctors who rejected services, friends who couldn’t handle Lyme disease’s twists and turns, family members who completely abandoned me and insurance companies who won’t cover my needs to heal. I am the receiving end now of discrimination, and my eyes are wide open.
11. Death can feel like a constant lingering shadow, just around the edges. One more thing goes wrong and another downhill fall with no end in sight starts. Sitting and facing my own mortality — alone — staring at the walls of my home for months on end at the age of 30. Knowing parasitic bacteria cells have been spreading throughout my organs, muscles, bone, cerebrospinal fluid, brain and blood with the intent to kill my body. It’s an unparalleled violation. My lesson here is to view my body as a vessel, and my soul spirit as my true self. I am what I believe and put out into the world. I am not my swollen joints or brain fog.
12. It’s more than OK to get things off your chest, as long as you can have the energy to communicate with love and kindness. You don’t have to hold it all in all the time, and you don’t have to be stronger than everyone else all the time. A lot of guilt comes with chronic illness, especially when our loved ones are facing challenges alongside you. Guilt is a toxic anchor. It feels good to lift the weight every once and a while and say how we feel. We deserve peace, too.
13. The only certainty is uncertainty. Haven’t we all heard this before? But it’s never meant more than it does now. The crashing waves of change can be surfed with an open mind and heart. Sure you will get thrown off your board a million times, but every once and a while you catch that beautiful, crystal clear wave right into shore. My lesson is to not fear change, even if it’s painful news, but to accept its tides as my own.
14. Politeness goes a long way. You can feel like politeness is last on your list of concerns, as I have all year. But being so vulnerable has caused me to be extremely sensitive to words, tones and body language. There is a tricky balance of managing horrific symptoms with “thank you’s” and “please help me with this.”
15. Grief. Oh, the grief. You will be mourning your loss of self-identity before you knew it was gone. But in time, your identity will resurface in new spurts and blossoms. It takes patience, faith and a lot of bravery to explore the new you. Another grief I’ve experienced is the passing of friends while I’m being treated for Lyme. It brings a whole new kind of sadness, helplessness, terror and confusion to an already overfilled plate. I’m still learning how to process this.
16. Find your gratitude and whatever brings you an overwhelming sense of happiness and love. Hold onto moments filled with grace like lights at the end of the tunnel. Let the true love of those who have walked your journey with you in.
Think about the planet at large and how many people you could imagine loving. Think of the galaxy and galaxies beyond. The space for love, hope and joy is endless.
Follow this journey on GenevieveGoetz.com/blog.
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