“ 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.
Antibiotics, holistic, rife, ozone, bee venom, paleo, stem cells,B12 IVs, saunas, tastings, the list goes on. What type of of antibiotics, do you combine them, do you pulse them, should you IV them, should you only do herbals? What about Holistic? What about Reiki? Should I go to Germany or Mexico for my treatments? What about….every.single.thing.I.find.on.the.forums.
Lyme disease diagnoses tends to follow a type of equation- the first part is trying to obtain a diagnosis. We tell ourselves unknowingly that once we have our answer as to what is making us so sick, it’ll be much easier. That is usually true in some cases- once we can put a name & face to our enemy, we can begin to develop a plan of attack. But what if our enemy is constantly moving and shape shifting? So, we obtain our diagnosis and then the reality sets in that even though we have a name and a face for our disease, the protocol isn’t as easy as we may have hoped it would be. So, then we go onto the forums and begin to do our own research, which we must do, because to fight off our enemy, we must learn all of its weaknesses. And this is where it appears virtually every Lyme patient begins the process of becoming extremely overwhelmed.
I personally have experienced it, as I am sure you have too if you are reading this either as a person with Lyme, or someone who has a loved with Lyme. There is a legitimate reason it’s called “falling down the rabbit hole.” Just when you think you’ve read through the majority of possible treatments, ten more pop up. So what is someone to do?
I am not a doctor, so I cannot advise you one way or another in regards to treatment protocols. However, as a mental health provider, I can advise to tune into your own self and take a look at your own stress levels. Yes, it’s paramount to be your own advocate, yes it is important to become literate when dealing with any disease as tricky and elusive as Lyme Disease. However, it is easy to lose yourself, your sanity and sense of control when you spend hours reading up on hundreds of different treatment protocols.
Many of these seem very promising, as do the promises that come along with them- we may hear that someone got better within months or even weeks, so it is only natural that we would be willing to try anything in the name of having our health back.
I encourage anyone when feeling overwhelmed and lost to think about taking a step back from over thinking, over-researching and overanalyzing (easier said than done, I know). The main difficulty with Lyme is it doesn’t tend to adhere to any timeline other than it’s own, it will get better in it’s own time, not when we want it to. If you have a good doctor, I would encourage you to put your confidence in your doctor’s abilities and put energy into self-care and centering this energy around thanking your body for the fighting it does day in and day out to keep itself alive. There is no magical pill or phrase that will make the frustration of this disease go away, however there are small steps we can take to help ourselves regain some sense of relief in our lives.
After receiving devastating news regarding our health, some of our first thoughts become “How am I going to tell the people I love?” This alone is a very heavy weight, and there’s really no “right” way to tell those you love that everyone’s life is about to change.
It is human nature for those upon hearing awful news such as death, divorce or illness to feel uncomfortable and want to move past these feelings. The second feeling the many people feel is the immediate need to say something to try and fix the person’s feelings. While none of these are bad, these things can be harmful to the patient or person. The knee-jerk reaction to sooth the person in front of them is often more about the person’s own feelings of discomfort in sitting in bad news.
As a Lyme patient, I am sure you all have seen people deal with this in different ways- some with sadness and compassion, others with disbelief and denial.
But what about the person who is ill? Upon receiving medical news or even when opening up about past experiences, it is natural begin to feel the guilt and burden of your medical someone else’s discomfort. What I will hear from those struggling with not only Lyme, but any variety of illness or “bad news” is the need to keep it to themselves out of guilt and stress. “I don’t want to be a burden” or “ who wants to talk to me? I’m the most depressing person on the planet.” As a result, many people become not only isolated from their loved ones, but end up telling themselves through their inner voice they are not worth being listened to or cared about because of their illness.
As natural of a response as “It’ll all be okay in the end, you’ll get through it!”, it’s actually harmful for a few different reasons. Statements such as these do not acknowledge the feelings of the person experiencing the damaging event. The fears, the unknown, financial liability, anger, sadness- all of these emotions go unnoticed and feel pushed aside. It is so hard because most people who have yet to experience such a shift in their lives don’t understand that the here and now is the daily reality, and the reality is that things might actually not be okay for awhile. If I could ask society to change one major way in the way they respond to a sick person, it would be to change those well meaning positive blanket statements into a simple “And how are you doing with this?” By asking about how the person is feeling, they are in turn actually being helpful by acknowledging there’s emotions and nurturing the hurt part of the person instead of shutting down the discussion with a “nothing lasts forever” inspirational Pintrest quote.
Another phenomenon that seems to happen to those who are ill is the change in their relationships. Some may find while few have gotten stronger, others begin to dissipate. The social calendar begins dwindling and inquiries are met with a “ well, I figured you would be sick anyway, so I just didn’t invite you” or the “I didn’t want to bother you.”
All of these send a collective message to the person who is ill that they might no longer matter to the rest of the functioning world. What was once importance to those we held close is now an infrequent thought to them. So the ill person continues to isolate, no longer sees the point in reaching out. With isolation, pain and depression, anger is born and becomes a new friend.
While I can not promise you people are going to understand your experience and all of your relationships will withstand the test of chronic illness, what I can hope to do is urge you to continue to reach out. Through isolating and telling yourself you are an unmanageable burden leaves you with no one to help you with your emotional pain- everyone needs someone. I would encourage anyone in an isolating situation to try and find someone within their area to connect with- there’s online groups sectioned off by location, meet-ups and text for those who can not leave the house. You are not a burden and you do not deserve to be alone in your pain.
Maybe it started out as just you, and then you met your significant other. There’s always the intro to the love story, the honeymoon and happy times. Then something bad happened. We often see in the Hollywood movies, something devastating happening to one partner and the other one, or perhaps the family, rallying around the sick person until the issue is fixed and everyone goes on happier than before. Sound familiar?
While life is never the movies, we often have expectations that when we fall ill, we will somehow have those we love the most rally around us. But what happens when we become ill with a disease that is not only not widely recognized, easily dismissed by the medical community and is chronic? The romanticism, empathy of others, well wishes, everything begins to dwindle off and we are left feeling lost, isolated and angry.
To say that Lyme disease changes your life is an understatement- Lyme changes everything from your own body, ability to work, to your own relationships.
When someone is diagnosed with an illness such as Lyme, it is impossible to for it to not change the dynamics of a relationship. It is no longer you and your partner, rather you, your partner and the Lyme. So how do we handle when this twosome becomes a burdensome uninvited threesome?
Everyone handles changes differently. I cannot emphasis enough the need to have a long talk with your SO (significant other). This talk will be tough, it will be raw, it will have to be honest. This talk needs to address what will be the new normal in your life and how both partners are going to handle this. There are different ways this can be done, and the end goal is this will be done together.
When people hear the word “trauma” they often think of a car crash, assault, witnessing a robbery and sudden violent acts that alter our lives.Throughout my own life I have experienced a variety of traumatic events and through therapy and support of loved ones, I have manage to live and deal with a lot of my own trauma symptoms in a healthy way.
Having had the experience of living with PTSD, I began to notice these strong overpowering feelings and sensations reminiscent of when I struggled with it.
It wasn’t until months down the road of having chronic Lyme, that I realized I was suffering from traumatic grief.What many people and professionals unknowingly ignore are the psychological effects of living with a serious debilitating disease. Much like a traumatic event, we begin to have a distinctive separation within our sense of self: life before the trauma and life after the trauma.
In this specific case, our lives become a painfully distinctive “before illness” and “after illness.” We start to become frustrated with ourselves, others and life because everything after illness becomes so distorted. We are no longer who we once were, and no matter what we do, there is no going back to the person we had been before illness crashed into our lives.
As with any life-altering event, everything changes; we must adapt our entire state of being to accommodate previously unknown territory.
The seemingly small tasks such as keeping plans or lifting groceries, tasks we had taken for granted as being easy, are now incredibly frustrating and emotionally compromising.I never thought about how convenient it was to lift a case of water into my car until I had to wait 20 minutes at Target for someone to show up, rolling their eyes at this seemingly normal-looking person, to help me at checkout. I had also never considered how ashamed I would feel that at 27, needing assistance to lift something. I never took into account how emotional I would feel having a PICC line that sometimes noodles out of its cover on my arm, inviting curious stares of strangers.
As with most things in life, nothing truly prepares you for rebuilding a new life and a new sense of self. Friends, family dynamics, jobs, marriages, relationships, how we view ourselves to how we define our identity completely changes. The roles we once identified ourselves with, now have to shift into a new role, to a role we aren’t even quite sure of how it should look.
Usually when we hear of some awful event in the news, be it a shooting, a murder or whatever it is, we hurt for the survivors and their families because we know they now must adjust to a newer and scarier reality, where they have confronted the worst case scenario. I believe it is not to be taken lightly when someone becomes seriously and/or chronically ill. I personally had found myself going through a grieving process-I had to grieve the loss of the “old me.” I truly believe that is one of the most important bridges from becoming ill to successfully living a new, changed life.
It is widely accepted that there are 5 stages to grief: denial, anger, bargaining, depression and acceptance. As with most of life, there is no handbook that tells you exactly what expect and how to process this. Additionally, grief will ebb and flow- some of us emotionally revisit certain stages even after accepting our illness. It is important for our emotional wellbeing and psyche to be able to fully explore our feelings and make sense of them, as we are coming to terms with living this new life.
When I first heard there was a strong possibility I had Lyme, I was so sure the doctor was feeding me a ‘lazy diagnosis.’ After all, I had seen so many specialists certainly someone would have noticed something as bazaar as Lyme. I went home and researched it- there was no way I could ever have something like Lyme- heck I saw it wasn’t even ‘common’ (which I now know is an all too common myth).
After getting my blood work back, seeing my LLMD, I still was not able to fully process that I had this disease, a disease that would mean I needed to change the way I eat, my living habits, my physical and mental state.A few months into treatment, I found myself raging at strangers in public for situations I would have once rolled my eyes at, suddenly I was yelling at strangers who blocked my car, were in my way or just in general pissing me off. I still become extremely angry, however now I have learned how to cope with my feelings instead of acting out because I felt I had a valid reason to be angry at the world.
Three months into treatment, I told my husband I couldn’t ignore the feeling that I would be less of a burden to everyone if I simply ceased to exist. I was depressed. Painfully, gut wrenchingly depressed- this wasn’t feeling depressed about being sick, this was “waking up with a pit in my stomach every morning realizing I had to live another day as me” type of depression. Thankfully with my IV antibiotics, a supportive husband and some amazing friends, the depression has decreased significantly.
Perhaps the most confusing part of this process is that I found myself making pacts with the universe, told myself I could will myself healthy again if I tried hard enough. I found myself abiding by old superstitions as a way of trying to get the universe back on my side, just in case there was a way I could prove to whatever it was that I was willing to get better, no matter how silly the rituals.
Now, almost 8 months into treatment, I have days where I feel I am in a good place, and can start to let myself be happy again. I will have some good days and think “I can do this!” and other days when I cry for my former life, my “normal” self.
IT HAS BEEN A STRUGGLE EVERY DAY TO ACCLIMATE TO MY NEW NORMAL.
I know I have changed and have come to accept the inevitably long, complicated path to becoming emotionally okay with what has happened. I know that I have survived trauma before and adjusted. I also know that sometimes coming to peace with the fact that while things may not be okay now, or even for a some time, eventually my body and brain will adjust, allowing me to be happy again even through the trauma and grief.
Not all trauma and grief is a bad thing. I know I have become braver, more resilient and a more compassionate person from my illness; as Carl Jung (a pioneer in field of psychology) once said:
“THERE IS NO COMING TO CONSCIOUSNESS WITHOUT PAIN.”
Alexis is an advocate for mental health wellness in the Lyme Disease community