“ This illness is asking a lot of me. It’s asking me to change so much on my template. It feels right now like all it wants me to do is give up, give over my varied ways of living my life, knowing myself, sharing with others. I am at the very edge of myself.”
p. 140, Out of The Woods
How many of you can related to this statement? Whether it is Lyme Disease, co-infections or any chronic autoimmune illness, these diseases have a way of changing us and taking certain things from us. As with any major illness, we experience a loss in financial independence, physical independence and are thrust into emotional turmoil.
What is perhaps one of the most challenging parts of adjusting to any illness is learning to change the template. This template is your way of life, way of thinking, living and making choices. I will often hear in my work (and have experienced as well) feelings of anger, as this disease has taken so much from who the person once was. Sentences of “I used to be” or “ the old me” and “ I want to be her/him again” come up often. It can be immensely upsetting to see photos from a before Lyme time and we could spend hours mentally revisiting what our bodies were , the things we accomplished, going out to eat without needing to implement a Spanish Inquisition on the waiter. It feels wistful, but also sad spending so much time in the “before.”
What if we could flip the script and begin to build a new story? Instead of only appreciating things about ourselves in the past, preventing ourselves from feeling accomplished today and looking forward, what if we could somehow learn to live alongside our disease? What about shifting a focus to increasing a hopeful emotional state? Flipping the script, changing where we direct our mental energy has not just beneficial physical effects, but strengthens our core of hope.
In building a new story, I would encourage you to begin to become mindful of where you are, in the present day. There is probably a lot of unharnessed energy that could be redirected from anger to identifying new ways to feel okay about you. When we begin to speak and identify our positive qualities from a here and now prospective, it becomes empowering and lets us currently identify what we like most about ourselves. If you were constantly comparing the “before me” to the “now Lyme me”, then you would be setting yourself up for a failure through unrealistic standards. You wouldn’t expect someone who just had a healed broken leg to start running a mile, would you? So why are we putting these unrealistic expectations (I SHOULD be working 40 hours a week, I SHOULD be less tired, I SHOULD be better by now) on ourselves if we wouldn’t do so to other people?
Starting in the here and now, what are one to three positives you can identify about yourself? I bet you are much stronger, more resourceful and way more resilient then you had thought. How about your capacity to hear and care for other who are not well- has that been strengthened throughout this process? Taking these new positives, how can we work these empowering traits into your new narrative?
Try allowing yourself to be who the new you is- what do you want to show in your new template? Not many people get a chance to create a new sense of self, so think deeply about what you want on your canvas. It is completely up to you. You ARE so much more than your disease. You ARE your own person. You ARE in control of your story.
Alexis is an advocate for mental health wellness in the Lyme Disease community