The Reality of Life After Lyme Disease

The reality of life after Lyme disease will likely not be how you imagined it. I know that I imagined partying with my friends again, going to rock concerts and becoming a marathon biker. All roses, sunshine and balloons. For me, at least, that’s not exactly how it all unfolded. It was difficult to re-integrate myself back into a meaningful life. I had some struggles and hit some speed bumps along the way, as I re-emerged into the new butterfly that I am. Ultimately, however, I have found it to be way more fulfilling than suffering through a life of uncertainty and fear as a life-sucking bacteria robbed me of my energy, my motivation and my health.

The reality of life after Lyme may be bumpier than you hoped-but don’t lose hope

So, you have finally made it to the other side! Your doctor has pronounced you in remission. Congratulations!! You’ve likely been waiting to hear those words for so long. But now that you have heard those precious words, releasing you from months or years of hell, your heart begins to pump erratically. Your face flushes and your palms get sweaty. You begin to think, I’m in remission…now what?? I don’t feel ready to tackle life again. I’m no longer exhausted because of disease, now I’m exhausted from the battle. I need time to breath and adjust to the new me. And those thoughts are completely justifiable. So the reality of life after Lyme disease is a little different than you hoped, or imagined. But don’t worry, I’ll share some sage advice I gleaned from stumbling through the process.

** I’d like to quickly point out that I suffered from late-stage Lyme disease. I went undiagnosed for twenty-plus years. My battle was long and hard because those little buggers had years to set up shop and play havoc on my body. Your reality after Lyme disease will not necessarily match my reality after Lyme disease. I’m not here to scare anyone. All I can do is share my reality and hope that you are able to extract what you need to hear in this moment.

Re-integrating your life can be challenging

I remember well staring out my window observing life pass me by. With longing I would watch healthy people on bikes pedaling past, runners jogging with ease and families strolling by holding hands and laughing. As I sat there, staving off jealousy, I imagined the day I was the one riding my bike, running or simply on an evening stroll, hand in hand with my husband and our beagle Oliver. I believed deep down inside that as soon as I was in remission I would attack life with a renewed vigor. The truth of how things unfolded couldn’t have been further from the truth. Reintegrating back into life was not without its challenges.

Don’t get discouraged, everyone’s experience is unique, but it has taken me almost two years to feel normal out in the world. After years of living a structured life, afraid of everything and nothing all at once, it was challenging to accept that I was well and capable again. There was a long process of re-wiring those thoughts that had ruled my brain for years.

Within weeks of being pronounced in remission I was diagnosed with chronic PTSD. The reality is that PTSD is pretty common for Lymies. Living in a constant state of flight or fight is traumatic and has its consequences. That didn’t make it any less discouraging when I had to resign from my first job, after being unable to work for over two years, because I couldn’t get through a shift without hyperventilating and flop sweating. That was an aha moment where I found myself thinking, I’m finally in remission and I still can’t work…what now?!? I’ll tell you what now…I slowed down and realized this was going to take some time. I needed to heal my mind and allow my body to process all that it had experienced. If you find yourself having panic attacks or flashbacks I encourage you to seek help. You can read about my amazing journey through EMDR therapy here.

Take your time and be patient with yourself

It’s important to set reasonable goals for yourself from the outset. Even if you’re lucky and don’t suffer from PTSD, it’s likely that it will take some time for your mind and your body to be ready for full-time work. As a massage therapist, I knew it was going to take time to regain my strength. So, I ended up taking a part-time job at a local bookstore to re-introduce myself to the world.

After two years of barely being able to walk around the block with my dog, standing for hours at a time felt daunting. Even the necessity to chit-chat with customers was unnerving. I hadn’t really spoken with anyone but my husband and a few family members in a long time. Having idle conversation felt foreign and awkward. I got more than a few sidelong glances at my attempts at levity and wit. But, I kept going. I reminded myself how hard I had worked in order to live a full life…for the first time since my teens. I was patient with myself, and thankfully, so was my employer.

What if it comes back?

One of the most challenging aspects of remission is the reality that you may slide back into illness at any moment. Each time you get a slight head rush from standing up too quickly or you drink too much coffee on an empty stomach causing your hands to shake slightly…it’s terrifying. I had to learn to sit in my body instead of running away in fear. Now, when I start to get scared because something feels reminiscent of a Lyme symptom I stop, take a deep breath and listen to my body. I ask it questions and thank it for fighting so hard for me. You can read more about this process here. Suffice it to say, re-entering life after a prolonged illness can be daunting. And in all truth, some of us may have a new flare-up and need a boost of antibiotics. Still, I encourage you to breath and live your life instead of living in constant fear of a relapse. If it happens…IF it happens, you’ll be more prepared and deal with it as it arises.

So, you’re in remission…now what? Start anew but start slow!

You have been given a fresh lease on life. It’s important that you don’t get trapped in an eddy lamenting the ‘Past You’. The reality is that you will likely never be the person you were before Lyme disease turned your life upside down. After all, how could you be the same person? You’re a warrior now! You battled a formidable enemy and you won! You waged a war against an unseen, stealthy invader and came out the other side swinging. That is the new you!

However you decide to tackle this new start to your life, I encourage you to take it slowly. Don’t be surprised if outings take their toll and leave you exhausted. You likely won’t be able to jump back into old activities right away. Instead, dip your toe in the shallow water. See how it feels.

My outings started with short walks around our neighborhood. After time, two blocks turned into four and then I was ready for a bike ride. One block at a time. I didn’t immediately start with dinner parties and going to rock concerts. Instead, I looked forward to date night with my husband at a nearby restaurant and trips to the coffee shop by myself to read a good book. I took it slow and steady. One foot in front of the other. The few times I attempted to leap onto a new path I immediately new I would pay for it the next day, or days.

So, the reality of life after Lyme disease may prove more challenging than you’d hoped. However, I know you can do it. Don’t get discouraged, take it slow, seek mental health therapy as needed and most of all, be proud of yourself. Enjoy this new lease on life. And remember…You kicked the shit out of Lyme disease!!