Pardon me for getting into the nitty gritty, it is what is coming through (literally) at the moment. A writer gotta write what’s true. Much gratitude to those who choose to read on.

So, for the last few months, following an intense stomach flu, I have been experiencing constant GI issues ((of the liquid kind)). Add to that gut-wrenching bloating, cramping and nausea. Having decades worth of knowledge about what foods tend to help or hinder the situation, I’ve attempted to alter my diet to see if this would help quell the situation.

At first it seemed that the BRAT (Banana, rice, applesauce, toast) thing was helping. The symptoms would go away. But then, they would return, in full force, having me doubled over in pain. I experimented with adding back in my normal foods to not get too restrictive or phobic about what foods might be causing what–I know I can slip down that rabbit hold very easily. That, again, seemed to trigger painful episodes. So I returned to the bland land of BRAT foods.

I went to the doc after a few weeks of this. Although I am not someone who takes pharmaceuticals often I do believe in at least getting a thing checked out. After blood tests and the lovely stool collection, what she found was zilch, nada, nothing “serious.” She said, very plainly, “I think what you have is something more functional, like IBS.”

To most people this statement would suck. A long term, chronic diagnosis is nothing people want to hear. But to me, these three letters bring a certain sort of heavyweight despair.

You see, I watched my mother turn cold, bitter, isolated and mean as a result of (or at least mostly due to) this diagnosis. Constant trips to the doctor, only to have them tell her there was nothing they could do, that she’d have to just “deal with it,” chronic dehydration and pain…it just destroyed her. She couldn’t go anywhere without having to be in the bathroom most of the time. She avoided eating much so that she wouldn’t feel the symptoms while she was out. Eventually the symptoms happened no matter what she tried, and were embarrassing and disruptive to any kind of social/recreational activity. I watched her wither and vacillate between boiling with rage and resentment to being utterly hopeless and wanting to die.

So these letters–I.B.S.–have a horrible weight to them for sure.

I am still reeling from hearing those letters come out of my doctor’s mouth, I am still deciding whether to take them in and accept that they are indeed also what I may have to deal with for my whole life. I find living in the present to be much more helpful than spiraling into worry about a chronic condition, and I am trying to do this. Yet the image of my mother (who by the way died in the bathroom!) irritable and bitter keeps pummeling into my mind.

But I didn’t come to the page wanting to write about this. What I came to the page to write about is the intersection of eating disorders, disordered eating and IBS symptoms. Through this experience, and through watching what happened to my mother for so many years, I begin to wonder who wouldn’t become avoidant of food, who wouldn’t create and follow a list of safe foods and eating rituals to try to help avoid these horrid symptoms. I began to wonder whether what is considered “disordered eating” is in fact not disordered at all but a very reasonable attempt to do whatever could be done to avoid the body’s painful reactions when no one can figure out what is happening.

I began to wonder if there was a subset of people that do not drastically alter their diet because they think they are fat, or worthless, or dirty, but rather because what they are doing seems to help them avoid the very real physical pain they are having that no doctor can help them figure out.

I began to wonder whether some of these people feel so out of control with what their bodies are doing, and what they are trying to do to control it that they themselves wind up in treatment but then feel misunderstood when the typical diagnosis doesn’t respect their experience.

I began to remember that this person is me.

I’ve been to so many dietitians, inpatient, day programs. I’ve tried following so many meal plans and eating rituals to attempt to help this situation. But during these last few months, when the symptoms have escalated from more than just discomfort with fullness to a painful experience upon eating just about anything–I have reached a sort of end of my rope. I’m not sure what to do.

Yet in the midst of that, what I do know is that I am curious and filled with deep compassion. Curious if there are more people out there that experience this, who are misdiagnosed with eating disorders and who feel lost and misunderstood. Somehow, through this life, I have found compassion for myself, for my mother and now for others who may be going through this experience. Somehow I retain curiosity about what deeper messages and purpose these symptoms may be leading me and other towards.

My “recovery coach” is also stumped, having only tools to help me battle ED voices and thoughts about calories and fat grams. I am not having these voices and thoughts. What I am having is layers of despair, frustration, hopelessness and pain and an inability to absorb nutrients that I can’t seem to control. These are not things that a recovery coach help with, aside from being there with me as I go through it, with words of support. Is this experience with me teaching her that not all people who struggle with food issues have a body-dysmorphic eating disorder? Are my symptoms a teacher for a new paradigm? Pardon these crazy thoughts.

So where does this leave me? With IBS? With an eating disorder? With, for now, an irritated gut that may soon find itself healed? Did I ever have an eating disorder, or has it only been my attempt to avoid the very real physical pain I feel with eating anything more that what is needed to survive?

I don’t know. I do know I am probably not alone. And if you are reading this and can relate, know you are not alone either. I’m not sure how I will deal with this, if I have some sort of chronic thing and will twist myself into a bitter haggard old woman dealing with it like my mother did. What I do know is that I am here, now. Things are okay–here, now. What I do know is that I still have a fire inside me that wants to understand the deeper layers of my body’s message, if I can find some way to find light in it all for myself and for others. This is all I have, and hopefully I will have more to share about it as the research continues.

Without knowing it while writing it, this is mostly what my memoir, Food Memories, is about. Only after writing it, and experiencing this again, do I understand more. I keep understanding more and more in each re-read as I prepare it for publication. How Food Memories is about my struggle to understand, cope and find help with this mysterious and frustrating experience of being in a body. How it is about at first trying to fit into the ED paradigm to hope for some cure, to feeling lost and disappointed with not finding relief there, to now, struggling with increasingly painful symptoms that doctors have no idea how to treat. It has been many months of attempting to birth this creation and perhaps it is because I need to understand more before I release it. Perhaps I needed to have this experience and its layers. Regardless, I am trying with all my might to push this text out into the world, hoping to find others that can relate, hoping to find some magic, healing and connection in the sharing. As always, I will keep you posted about when it is fully born.

My heart goes out to yours if you are dealing with this or some other chronic condition. Please do not hesitate to contact me if you want to share more.