Too often, chronic Lyme recovery is seen as binary. You’re either sick or well. Unhealthy or healthy. But I find myself in the in between. I’ve healed the Lyme infection, but my body still has some recovery to do. Lyme was the hurricane that devastated my body for years. Lupus, joint damage, fatigue, and pain are the aftermath. I’m cleaning up that damage, and continually facing new layers of my recovery. In my last post I talked about how the way you view recovery has a profound impact on your chances of recovery. In this post I want to talk about claiming your health when you find yourself in the in between.
The In Between: Liminal Spaces
In cultures throughout the ages and across the globe, the in between has been honoured as a part of one’s journey. It’s only been recently (the last 200 years or so) that in the West we seem to have collectively forgotten this important bit of our experience. We’ve become obsessed with being either/or, sick/well, healthy/unhealthy.
I see this played out on social media, where you see accounts which are either a window into being chronically ill, or are by people who recovered, experiencing no symptoms, ever.
None. Nada. Zip.
I struggled with this for a while because I wanted to be true to my experience, but I didn’t know how to do that. I wanted to show that chronic Lyme recovery is possible, but also be honest about where I’m at. But the truth is that I felt shame. I felt shame that I still experience symptoms, whilst I’m helping others. I felt shame that I was calling myself healed but still having some bad days.
What Is a Liminal Space?
Liminal comes from the latin word limen, which is a threshold. Being in a liminal space means being between something that we once were, and something that we are yet to become. However, in order to fully pass through, you need to release what you were.
Anthropologists talk about liminality regarding rites of passage. It’s that time of ambiguity and disorientation when the rite of passage is occurring. The participant no longer holds their pre-ritual status, but they haven’t yet transitioned to the status that the rite of passage confers on them. In some cultures, an interrupted rite of passage is seen as gravely dangerous for the spiritual health of the participant, who would become stuck in the in between.
The Thresholds & Chronic Lyme Recovery
I’ve found that chronic Lyme recovery is similar. You first have to pass through the first threshold of getting sick, and accepting it. Then, once you’ve treated Lyme, you have to pass through the second threshold between being sick and well.
There is a huge amount of information and support available for people passing through the first threshold, but very little for those ready to pass through the second threshold.
It’s important because here is where the work begins on repairing the damage Lyme left behind. To move through the liminal space into full health, you need to let go of the labels and identities of being a sick person. You’ve got to stop clinging to the doorframe, to the identity of being sick, to walk over the threshold. And not many people discuss that.
I see so many people in that place between sickness & health that can’t let go of the old to make way for the new. I get it. And quite frankly, I think it’s part of the process. But if you’re ready to start letting go of your sick identity and stepping into your well identity, you’re in the right place.
The First Threshold
The first threshold appears when you first get sick. I thrashed around that doorway for a while. I didn’t want to accept that my body was struggling, that my abilities had changed and that the course of my life had been altered. Logically, I had accepted that I was sick. I knew I had Lyme Disease, Arthritis, Lupus, CFS and a host of other issues. But I hadn’t accepted it.
I would do my best to appear ‘normal’ to as many people as possible. I would arrange social plans, which I would inevitably have to cancel. However, I wasn’t communicating the why to my friends. They experienced me as a flake. And my relationships suffered. Some ended.
I would push my body to extremes at times, in a perverted attempt to prove that I was fine. I would crash frequently, and then try to hide it.
In my pursuit of connection, I chose relationships that were harmful to my mental & spiritual health. They were emotionally unavailable, sources of great pain and not feeding my soul. Why? A healthy, emotionally available relationship would take energy I didn’t have, and honesty I wasn’t willing to bring.
I was clinging to the doorway, refusing to walk through.
Finally walking over the threshold and passing through that liminal space finally let me fully accept my chronic illness. I began to own the fact that my life, my body, my plans had all changed. In many ways, that’s a dark place to be. I let myself fall back into the darkness. I experienced depression and grief in ways I didn’t know were possible. My life became small.
Fully accepting my chronic illness allowed me to truly begin the healing work though.
Spending that time fully identifying with it, living it and honouring it gave me many tools to continue my healing journey.
What Did I Learn?
I learned that my worth is not less because of a chronic illness.
I learned to do away with shame and stigma associated with disability.
I learned healthy boundaries.
I learned how to prioritise my needs above others’ wants.
And here’s the kicker: I couldn’t have skipped that step. All of those experiences were completely and totally necessary for me to get to the other side.
The Second Threshold
On the journey of chronic Lyme recovery, you’ll get to a point where you’ve started living life again. Your treatments are no longer causing the debilitating herxes they once did. You can tolerate old foods again. Your flares and crashes are becoming more infrequent. Spoons are more abundant.
It’s at this point that you’re being invited to gently loosen your hold on the sick identity, to make room for the well identity. So many people reach this stage but are too frightened to let go that they just remain in the in between. Hovering on the threshold.
I get it. It’s scary to let go of the identity that’s been your shield for so long. You’ve probably adjusted to living with chronic Lyme, and you’re probably scared that you’ll never be well again. You’re scared of hoping for a Lyme-free future only to have it blow up in your face. You might also be scared that letting go will mean letting go of the support you’ve got.
How to Begin Making Space for Healing
You don’t have to change your life up overnight. That would be unrealistic. But what you can do is begin to make some space for healing, to clear some blockages that may be holding you back from chronic Lyme recovery.
Ditch the Labels
Words hold unimaginable power.
In the early and middle stages of chronic Lyme, it’s incredibly important to be able to accept your health struggles. With that usually comes some form of owning it by using descriptive words like disabled, chronically ill, Lymie or sick. But when you’re ready to start moving into wellness, it then becomes important to not continue labelling yourself with words that you no longer identify with. Why? Because you bind yourself with those words, and it makes it all the harder to move forward.
A good way of doing this is to swap “I am..” for “I am experiencing…”. For example, you move from “I am sick” to “I am experiencing sickness”. You move from being a sick person, to being a person who happens to be experiencing some sickness in this moment. Subtle, but powerful.
Quit Fortune Telling
How do you know you’ll always be sick? Do you have a crystal ball?
Chronic Lyme recovery can feel like a mountain, and part of that is fear around always being sick. But in the same way that fully experiencing your chronic illness is important for accepting it, letting some hope grow is important for moving into wellness.
What can really help here is to actively seek out the stories of those who’ve healed themselves. There are many wonderful Chronic Illness Warriors out there sharing their journeys and battles and opening a window into their lives, and those stories are hugely important. But there are also people sharing the hope of recovery. And if all you’re seeing when you scroll social media are the stories of those who are in the acceptance phase, you risk giving yourself a skewed view.
Expand Your Healing Horizons
Now is the time to begin looking at your mental and spiritual health. You’ve done so much hard work on healing your body, but we are more than our bodies, and ill health has more origins than only the physical.
Trauma shows itself in many ways, through stored pain, dysfunction and blockages.
Chronic Lyme Recovery: Final Thoughts
Moving from sickness to health is a journey that’s filled with ups, downs, mountaintops, and valleys. Unfortunately, it’s never a straight line from A to B. However, feeling like you’re in between sickness and health isn’t a failure – it’s an important rite of passage. You’re being invited to take some serious steps towards leaving your old life behind and step into wellness. I’d love to hear what you think though – what part of your healing journey are you on? The acceptance stage, or letting go stage? Let me know in the comments below!
