Am I Insane?

In my almost two decade career as a professional patient™, I am often bombarded with so many questions about my health from medical providers and laypeople alike.  This is because both my illnesses, Abdominal Migraines and Cyclic Vomiting Syndrome (CVS) are rare and mysterious disorders that amuse people when they learn more about it. 

The usual questions I am asked often refer to each of my illness’s symptoms and how they manifest. They ask what it’s like suffering all the time, how I manage to go on with life despite my not-so-healthy life, and how my disorders affect all aspects of my life, and how do I manage to still be somewhat successful in my life even though I am chronically ill.  I don’t know why anyone wants to know what it’s like to suffer, because I will never wish this suffering on my worse enemy.   That question always gets me, but these questions, however intimate and annoying they may be, are questions I can answer.  However, the question that always takes me by surprise is the following question: 

If I have such horrifying and traumatizing experiences at the hospital I still continue to go to, why do I continue to come back over and over again? 

Honestly, this is not an easy question to answer.  From an outsider looking in and from hearing all my near-death survival stories from the hospital, I don’t blame anyone for asking this question.  Whenever I need to get the patient advocate or social workers at the hospital involved in my care, they always bring up this question, and I don’t really have a great answer for them other than to question them on why they are the ones asking that question. 

But to start answering that question, I guess it’s similar to an abused woman who goes back to her abusive husband.  A financially, mentally, and physically abused woman often goes back to her abuser because even though her fear for her life is real, her mindset is that she has nowhere else or has no one for which to go back.  This is usually the case as it is classic behavior for the abuser to isolate the woman so that he is the only one that she can turn to if anything happens.  He acts like her hero, her knight in shining armor in the beginning, but that is only to isolate his woman and this makes it that much harder for her to leave him.  She doesn’t know what else to do other than to go back to him, the familiar, the known than to leave him, which is unfamiliar and unknown to her.

For me, in many ways, my hospital relationship is like that of an abused woman and her abusive lover. If you knew anybody in an abusive relationship, people often have a hard time understanding why the woman continues to stay, and why she always blames herself for his actions.  Of course, the outsider sees nothing but red flags all over the place in this type of relationship, and the outsider then concludes that she is insane, and has been brainwashed into believing her abuser’s promises to change. This is what battered woman syndrome is and I think that I have battered patient syndrome.

In the same way that the outsider sees something very wrong with the relationship of an abused woman and why she continues to go back, so too are people who think the same thing about me because I continue to go back to the very hospital that almost killed me on several occasions.  People can’t understand why I continue to go back to St. Mary’s after all the negative and traumatizing things they have done to me.  In fact, I developed PTSD after years of hospital abuse, and my best explanation for sticking with this hospital is that I rather stick with the familiar than the unfamiliar just as the abused woman would stay with the life she knows and that’s being with her abusive lover.  However insane that may sound to the outsider, in my mind as in the abused woman's mind, it makes sense.  Maybe her abuser might change and become better and maybe St. Mary’s might change and be better to me too.

Also, I have been to other hospitals and I had similar negative experiences there, and some ERs didn’t know how to help me, or they thought I was drug seeking because I asked for specific medications as not to reinvent the wheel.  I know what medications will treat me, and hooray for me for being on top of my own healthcare.  However, the minute you start asking for medication and their dosages, doctors automatically assume that I am drug-seeking, which is not really the case.  If anything, I am relief-seeking.  

Today, if I were to go to another hospital, both that hospital and St. Mary's will label me as a drug seeker since I have been at St. Mary’s for so long.  They will question my sudden change in my healthcare options.  Actually, I believe St. Mary’s wants me to go to other hospitals so as to refuse me when I come back to them; then, St. Mary’s Hospital is free of treating me and my many complaints and demands. 

What people don’t understand is that there are no CVS specialists in the state of CT, and the doctor I have is affiliated with St. Mary’s Hospital, and since I worked with him for so long, he is well versed on CVS because of our relationship.  With that said, this is one valid reason why I go back to that hospital.  Another reason is that I have been going to that hospital for over 17 years, and I don’t want to step out the frying pan and into the fire, so I stick with the familiar, and I am completely fearful of venturing off into the unknown. Perhaps, I might have a better experience elsewhere, but I don’t want to give St. Mary’s Hospital any reason to reject me from their services, which I thought was illegal, but it happens, because it happened to me this past summer.

They say that insanity is doing the same thing over and over again and expecting different results, and if that is the case, I am most definitely insane.  I am often wrong in my positive attitude towards my relationship with this hospital as I am often yelled at and berated by the ER staff. I tell myself this is not “exceptional care for every patient every day” like St. Mary’s motto boasts. It’s more like unexceptional care for me every time I go. But I still go, so that must make me insane.

While thinking about writing this blog, I came to the realization that the definition of insanity is not really doing the same thing over and over again and expecting different results.  If it really were, I will claim to be insane.  Rather that quotation is a catchy saying with no truth or fact to it.  Once I realized that, I also realized that I am not insane for going back to the same hospital.  I understand that my relationship is one sided since the medical providers are the ones with the power and the patients are powerless.   

In fact, I believe this power-dynamic is natural to all hospitals.  As a chronically ill person, I understand that no matter how hard I fight or how empowered I am, the doctors and nurses are the ones who hold the power.  And they can also retaliate in many ways, like making you wait for your pain medication, or lie about you to your doctor.  So when I am in the hospital, I fight all the time for my rights, and hope that this hospitalization will be a little better than the last time, and that makes me content.  It gives me a reason to go back to the hospital because maybe I might have a positive experience.  However, I won’t know if I don’t go back.  So instead of thinking of myself as insane, I realize that the best word to describe me is perseverant.  That is the method to my madness--Perseverance.

To be perseverant means "one's steady persistence in a course of action in spite of difficulties, obstacles, or discouragement." With that said, my relationship with St. Mary's Hospital is not a relationship based on equality and mutuality, but I am hopeful because I need to believe that things will get better because that is what makes me get out of bed every morning.  My perseverance is what keeps me alive and what allows me to have faith and hope.

All in all, my relationship with St. Mary's is not one of the greatest relationships I have had, but to think that I might have a different and better outcome is what keeps me going.  To be perseverant suits me, it insulates and protects me, and it allows me to keep the hope and faith even though I am engulfed with negativity in my life. I don't need to be negative because negative things happen to me.  If I allow my negativity to rule my life, only more negativity will come.  Therefore, I must stay positive no matter what.  In the end, it is my perseverance that allows me to be positive. It is what gets me up every morning and encourages me to live my life the best way I know how.