I don’t enjoy looking back on the beginning of my patient journey with gastroparesis. Even today, after more than a year has passed, when I think back to the first few weeks of mental anguish and physical agony that followed my initial diagnosis, I get distraught. You see, I did not understand then what was about to happen to me and how life-altering this condition would be. I often wish I could have known from the beginning what a horrible and incredible journey I was about to embark upon. I wish that someone had prepared me for the overwhelming emotional upheaval, physical changes, and social adaptations that would be necessary due to this devastating disease – as if that were somehow possible.
Since being diagnosed, my life has changed in ways I could not have envisioned, and many of these changes came about quite suddenly. My illness did not arise gradually and allow for adjustment. I had no time to prepare for what would be required of me. One day, out of the blue, I found myself vomiting, in excruciating pain, and on the verge of collapse. I was hospitalized that same day and put through a battery of tests (including one particularly terrible one where the doctors forced a tube down my nose and pumped my stomach). Within a week, I was diagnosed, given only a brief explanation of my illness and its treatment, and sent home. For the next few weeks, I was on a liquids-only diet and was told that I had to gradually work my way up to soft foods and (eventually) solids. I honestly believed that if I could simply endure those first few weeks of torture, I would then be able to return to my normal life.
I recall the doctors giving me an overview of gastroparesis. They told me it was “paralysis of the stomach” and impressed upon me that there was no cure. I remember them saying that some people would find dietary changes helpful, and if those didn’t work, there were a few medications to try – but they came with risks and negative side effects. I recall them telling me that some people would opt for surgery to implant a gastric electrical stimulator or resort to feeding tubes when their symptoms were severe. Mostly, though, I remember them saying that some lucky few would recover almost completely over time and would not experience long-term effects. Of course, this last statement is what I latched onto and believed would be the case for me. How could such a thing start so suddenly and not go away just as suddenly? After all, I was as healthy as I had been in my entire life prior to this episode. Not a big deal. I would suffer through the liquids-only phase and move on with my life.
But it didn’t happen that way. I went home believing I would continue to improve; instead, my condition deteriorated. Within a couple of days of being released from the hospital, I started vomiting again and could barely keep down liquids. The attacks of pain worsened, and I became so weak that I honestly could not lift my head up off the couch. I told my family goodbye. I truly believed I would die. I finally mustered up the courage to call my doctor and told him that despite the risks, I thought I should try one of the medications he had mentioned. He agreed, but because of FDA restrictions and the limited availability of my particular medication, it was two horrendous weeks before I could begin taking it. These were without a doubt the longest two weeks of my life.
Since starting the medication, I have stopped vomiting (for the most part) and I can now function well enough to make it through the day, but I still cannot eat without pain. It is clear to me now that I will likely never again be able to eat “normal” foods in “normal” amounts. I long for food. I think about it every second of every day. I want so badly to sit with my family and enjoy a meal again. This yearning for sustenance never goes away, and at times, it is almost unbearable. It is likewise clear to me that fatigue, nausea, and pain will probably be a permanent part of my life. And it is crystal clear to me that this is a life-altering disease from which there is perhaps no coming back. I have come to realize the horrors of hunger and malnutrition. I have experienced levels of fatigue that I previously thought impossible, and I have endured unfathomable pain. I had no idea I would face this. But that is not all.
Beyond the physical horrors of this disease, the mental and emotional aspects have taken their toll as well. Before being diagnosed, I was able to go about my days as I pleased. I could work, complete household tasks, attend social gatherings and family events, take long walks, frequent restaurants, and generally carry out my affairs with little impediment. I was unprepared for the limitations that would follow my diagnosis and for the isolation that would result from it. For the most part, I am confined to my home and can hardly ever leave. I joke that the only time I go out is to a medical appointment – and yet, that is the truth. I do not travel or “vacation”; I miss my child’s events; and I endure much guilt because I cannot attend even the most important family functions. I had no idea this would be the case.
I have also been forced to face my own mortality like never before. I believe my condition is deteriorating. I believe I am dying, and it is a slow, torturous death – death by starvation. I am not afraid of dying, but neither do I want to die. I worry about what will happen to my family when I am gone. I have a young daughter, and I fear her reaction to my death and the consequences that might result from her growing up without a mother. I cannot bear thinking about the pain it will cause my husband, and I worry that he might not be able to function when this occurs. I want to be there when my daughter turns "Sweet Sixteen." I want to hear about her first kiss. I want to be there for her when she is sick, scared, or needs advice. I want to see her grow up, get married, and have children. I want to know that she has a good career and a loving family. I want to grow old with my husband. Facing the strong possibility that none of these things will occur has been incredibly difficult, and it was something for which I was completely unprepared. The mental anguish is almost indescribable.
When I left the hospital a year ago with what I thought was little more than a stomachache, I had no appreciation of “rare” diseases. To be honest I am not sure I even understood the concept of “chronic” illness. I had no idea that most people, and even many doctors, have no or little knowledge of my disease and that there are few sources where one can find in-depth information. I had never sought help from any sort of support group prior to my diagnosis, and I had no idea these groups even existed online. I knew about advocacy efforts, but being a political science graduate, these were activities I associated with politics only. I was ignorant to the monumental difference these concepts, this activity, and this unknown disease would make in my life.
Since my initial diagnosis, I have discovered many different forms of research and sources of information. I have spoken to doctors, hospital personnel, patient organizations, researchers, and writers in my search for knowledge and answers. I have become heavily involved with gastroparesis (and other chronic illness) groups online. I have created and now co-administer a set of advocacy groups that seek to foster awareness and change for my community. I am active in online chats, meetings, and “venting” sessions. I am connected in ways I would have never dreamed possible a year ago.
In addition, I have discovered a whole new purpose and meaning in my life. Over the course of my journey, I have seen unimaginable suffering and need. I am overcome with compassion and concern for the people I have met, and I am likewise overwhelmed by the kindness and support they have shown me over this past year. My eyes have been opened to a world that did not previously exist for me. I have bonded with these souls in ways I never thought possible.
I understand now what I could not fathom in the hospital so long ago: this is a “forever” illness. It isn’t going away. It has changed me, and there is no going back to life as it was before – even if I were to be cured tomorrow. I was unprepared for this, and I often wish someone had initially impressed upon me the seriousness of my gastroparesis diagnosis. The truth is, though, that it is unlikely I would have believed them or heeded their warnings and advice. Something this devastating, this life-altering, cannot be known until experienced, and the unfamiliar path is just part of my harrowing yet uplifting journey.