Breaking The Chain of a Chronic Illness Mentality

By Jana

January 3, 2023

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For twenty-plus years my Lyme disease went undiagnosed. I then battled this horrendous disease for two-and-a-half years. Once I conquered and was pronounced in remission, I began showing signs of PTSD. I sought out a therapist and was diagnosed with chronic PTSD. For the past three years I have been in therapy to regain my life. I point this out because I recently realized I have spent nearly half of my life bound by the chains of chronic illness. Needless to say, the struggle of breaking that chain of a chronic illness mentality has been a formidable challenge.

When my confrontation with Lyme disease ended, I fully expected to walk out of that cave and attack life with a new vigor. I had grandiose ideas of an adventurous life full of physical prowess and endless motivation. The reality has been rather jarring. A reality that left me trapped in a cycle of mental landmines. It has taken me a full three years to truly appreciate the traumatic effects of the ceaseless fight or flight struggle for survival. I am now in the midst of learning to break that chain of a chronic illness mentality. I knew that my body had been tested to the farthest stretches of my abilities. I’m finally starting to grasp the extent to which my mind suffered. Now I’m learning to address the mental strain of that war against disease.

The chronic illness mentality

The chronic illness mentality may sound like some fancy term coined by a doctor or psychiatrist, but it’s not. It’s just how I’ve come to think of how my brain has been functioning since my battle began. This chronic illness mentality built up walls around my mind within the first few months of treatment. It was my protection from the world around me. In order to get through every day I had to treat my body in a way I had never treated it before. I walked around like a glass outline of myself attempting to walk through a minefield. There were obstacles everywhere and I had to be prepared, always. For two-and-a-half years I was “On”, constantly ready for an attack (if I wasn’t already in the middle of one).

In many ways I believe this survival technique is beneficial. Similar to the way a deer must be forever on alert for a predator, I had to keep my ears trained for potential danger. Our bodies are built to protect us. The mind is likewise equipped.

The danger lies in getting trapped in this chronic illness mentality. After living for so long in a constant state of unease, I forgot how to normalize, or equalize. My battle was so long and arduous that it became my identity. I was “sick” Jana. It became my brand.

Life post-Lyme disease

Two years later, I was still walking around as though I could break at any moment. I now had a healthy body but my mind couldn’t quite translate the message. I was still planning my life around treatment protocols that didn’t exist. My anxiety over making sure I got a nap, that I no longer needed, had me trapped. I found myself pausing to accept invitations, even for something I’m passionate about, due to an outdated fear that I’d have to cancel or be unable to participate. The constant fear of a Lyme disease relapse is only now beginning to fall away.

The long and the short of it is, my mind has been ensnared. I have been unable to break this chain of a chronic illness mentality. I am still bouncing around in a yo-yo effect of fight/flight or freeze/fawn. So, how do I break this chain of a chronic illness mentality? I recently heard a quote that really moved me and is an excellent guidepost when you’re talking about breaking down barriers. It is a famous Viktor Frankl quote that goes, “Between stimulus and response there is a space. In that space is our power to choose our response. In our response lies our growth and our freedom.” I love that. There is space in there to choose a response, and thereby grow and find a new freedom. I hope you’ll keep that in mind as you continue to read.

I have spent a lot of time and dedication learning to re-process how I view the world and react to it. As I’m still in the midst of finding my equilibrium, I’d love to share this journey with you. Here are a few of the best tools I’ve discovered for breaking that chain of a chronic illness mentality.

Be in your body

I have learned that many of us who suffer from chronic illness never fully exit the traumatic event. Instead, we’re left careening from one end of the spectrum to the next. We may experience moments of balance but mostly we zoom around from flight/fight to freeze/fawn. As a result, we are never truly comfortable in our bodies. One of the most important tools I have learned to combat this yo-yo effect is to simply be in my body.

I have talked about this a little in a past post but I find I have to remind myself frequently. I recognize how trite it sounds, to “be in your body”. You might find yourself thinking, where else could I be? Of course I’m in my body. But, the next time you find yourself panicking, close your eyes and relax into your body. Literally visualize yourself sitting in your body. This is that moment between stimulus and response that’s so critical. Simply be in your body and listen. Feel what it’s feeling and wait. It’s not meditating or thinking. It’s simply being.

Listen to your body

Next, comes the listening. Is your heart racing? Close your eyes and listen to it. Ask your body what it’s trying to tell you. Are you feeling inexplicably angry? Close your eyes and listen to the rage screaming in your mind. Ask your body why it’s so angry. I’m certain it has a good reason. Your body needs to be heard and acknowledged. Are you feeling restless and simply can’t sit still? Close your eyes and breath into that restlessness. Ask your body what it needs.

Have you been unable to get out of bed all day because you feel so exhausted? Ask yourself as you’re laying there,” are you really this tired or I am stuck in the “Off” position?” Do you feel flat, unable to find any joy or even the slightest amount of happiness? Consider that this may be your bodies “fawn” reaction to trauma. Have you been having bowel issues for a few days? Touch your belly with love and compassion and talk to it. Then, listen.

The answers may surprise you. You see, your body was built to protect you. Sometimes it will go to extremes to get us to listen. So, listen. I can almost guarantee, you will be rewarded. Simply being in your body may be the first step in breaking the chain of a chronic illness mentality.

Before you can break the chain, you can stretch the chain

Most likely, you’re not going to break out all at once. So I call this stretching the chain. Slowly begin to challenge yourself. This doesn’t have to be a huge leap, it can be simple, small changes to your routine.

For instance, I hate being in the house alone without the TV talking to me. As soon as my husband leaves for work in the morning, the TV goes on. In the throes of my treatment I was scared all the time and the TV helped me feel less alone. All day the familiar voices of Donna, Josh, CJ, Toby and President Bartlett would keep me company (I love The West Wing). It has become a remnant of life that I’m no longer living. Like gum stuck to the bottom of shoe. I don’t need it anymore yet it keeps following me. So, in order to begin stretching that chain of my ‘sick person’ mentality, I’m leaving the TV off. I am changing that routine and embracing a quiet household.

Exercise is another great way to stretch the chain. Start out slow with long walks. Maybe do some dancing in your living room. I found yoga to be hugely beneficial in learning to trust my body again. Plus, it’s meditative and calming. This is all about breaking that “I’m sick” mentality and entering a new cycle of life. Every time, literally every time, I have stepped out of my “sick body” mentality and challenged myself physically it has been so rewarding.

You may even find that things that used to interest you no longer hold any excitement for you. And that’s okay. Test your limits little by little. Invite new opportunities in your life.

Journaling

Writing your thoughts down on paper can be very cathartic. I love this quote from M. Night Shyamalan’s mini-series Servant, “Putting your feelings down on paper…it makes them real. Which can be terrifying. But, that will give you power over them.” I think of it as taking ownership of your emotions. Admit to yourself what is holding you back. I’m afraid of failing. I’m afraid of hurting myself. What if I get ridiculed and people laugh at me? Give yourself legitimacy by acknowledging that you’re stuck. Believe it or not, this can break the dam and release so much built-up tension, allowing you to move forward.

On the flip side, write down your hopes and dreams. Set out a new routine for yourself. I bought myself a beautifully crafted day calendar for 2023. I spent too much money on it (though for a good cause-it’s 100% eco-friendly) because it’s important to me to step into this new phase of my life. It was important that I look forward to pulling it out and writing down this New Me routine. I’m filling it with goals and quotes to keep me inspired as well as crafting a new routine for myself. Sure, you can do this on your phone or on your calendar, but there’s something about taking the time at the beginning of the week to physically write out how I would like my week to unfold.

Breaking the chain

Undoing the trauma of Lyme disease won’t happen overnight, so be patient with yourself. I wish there was a way to literally snap that chain in half and allow it to crash to the floor with a resounding finality. Unfortunately, it’s a process and it will take practice, determination and persistence. If you keep at it though, loving and listening to your body, slowly that chain will begin to breakdown. One by one, the links that are currently so tightly bound will soften. Eventually, you will release them into the wind and watch them flutter away.

As you move into this new phase in your life I hope you’ll share your successes, and failures. We learn so much from both. Let me know if any of these techniques work for. What was the experience like? Keep fighting Lyme warriors!

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