I don’t know where to begin with this. It is a bit overwhelming. But I know I need to at least try.
One thing, which is not openly discussed amongst the medical community, is the long term mental and emotional post-traumatic stress that comes from dealing with an illness. Whether the illness is acute or chronic, there is a certain amount of baggage that accompanies diagnosis, monitoring, treatment, and recovery.
This is something that is undeniably evident among those of us who have dealt with chronic or traumatic illness. Often we are told that our ailments are “in your head”.
This is one of the greatest challenges when addressing medical trauma.
For nearly two and half years following the birth of my daughter, I faced medical challenges the professionals could not find an answer to. Because there was no logical answer, the only one I was given was that it was all in my head. After being told that so many times, I honestly started to wonder if they were right. This in turn made me question my sanity.
I was finally diagnosed with Sphincter of Oddi Dysfunction (SOD), a rare bile duct disorder, in February of this year. It was the answer to why I had been sick for over two years. However, an answer and a cure are two different things. Informed by my gastroenterologist that there is no cure for SOD, my options for relief from the constant pain of liver and pancreatic dysfunction were limited.
One treatment was an endoscopic retrograde cholangiopancreatography (ERCP), a sphincterectomy, and a pancreatic stent placement. It was not guaranteed to be successful and it was a risky procedure with sometimes severe complications. It was a gamble to go through, but it was a success.
I experienced nearly immediate relief, and found myself searching for closure from such a traumatic experience. Three hospitalizations, countless trips to the emergency room, and barrages of tests and imaging were overwhelming.
I found myself relapsing into an eating disorder to help deal with the emotional complexities of post-traumatic stress. I felt apprehensive about moving forward, fearful of illness returning and fearful of going back to the medical community for help. But I also started to find peace, as my life was starting to return to normal.
However, that closure was put on hold as my other health issues, endometriosis and severe pelvic pain, took center stage.
One very important link between my ongoing pelvic issues was that SOD is adversely affected by opiate pain medicines. The drugs cause intense pain, often triggering bouts of pancreatic/liver pain and inflammation. I tried really hard to ignore these symptoms, to tough it out. But narcotic pain meds weren’t helping the pelvic pain. They were taking a toll on me physically and emotionally.
Not in a place where I could address all the parameters of what was going on, my focus was on survival: keeping my job, attempting to create a sense of normalcy for my young daughter and husband, and just getting through the day.
After nearly 3 years of trying to treat the source of pelvic pain, I surrendered. I made the decision to have a hysterectomy at age 28.
On September 12, 2013 I woke up in the recovery room and could immediate feel relief from the pelvic pain and pressure. After seeing the surgical pictures, I knew I made the right decision.
Five days after the hysterectomy, it hit me.
How does one process all the emergency room visits, hospitalizations, surgeries, missed days at work, and missed family events? How does one deal with the anxiety and fear of having to endure something like that again?
Even entertaining the thought that my medical nightmare was “over” seemed too much to wrap my head around. Was it was really over and, if so, now what? I did not feel joy. I did not feel relief. I was so overwhelmed, I cried.
I acknowledged medical trauma along the way, and eventually started working with a therapist and support groups, which have helped me understand the difference between survival and closure. To find closure from an experience of long term traumatic illness is pretty significant.
But when does the mental and emotional healing begin?
It is not something that is instant, nor should it be. But it is just as important as physical healing. Long term healing from medical trauma takes time. There are experiences that have been buried so deep while in survival mode, that time is the only thing that will bring them to the surface.
For myself, I am gradually picking up the pieces of my life, some pieces I did not even know I had lost amidst all of the medical madness. By addressing fear of the unknown, giving myself permission to accept what I went through was a challenge, and just embracing moments for what they are, I am finding healing.
My hope is that others, who have shared similar situations, also understand that it is perfectly normal to feel this way. Though it cannot be seen in labs or in imaging, emotional recovery is just as important as physical recovery.
Erin Margaret Joyce-VonBank lives in in Minnetonka, Minnesota with her husband and 3-year old daughter.
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The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that! It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.