Traumatic Experience and Grief that Comes with Chronic Illness

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 bizarre 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.”

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