Thursday, April 30, 2009

"But You Look So Good" ... Mixed Signals

How many of us have been told that "we look so good" as we struggle in public with the daily symptoms of digestive motility disease? I posed this question at one of our recent monthly Massachusetts AGMD Digestive Motility Educational/Support Group Meetings. Everyone in attendance responded by raising their hands, nodding their heads and reacting knowingly with their eyes. Ironically, people tend to say this when you are having one of those days when the struggle with your illness is more intense. So many patients have told me how much words like that anger, frustrate, and hurt them because what they are physically and emotionally going through on a daily basis is not recognized by others.

I have thought about this for quite some time over the years ... why do people feel compelled to give a testament as to how one looks when they know that someone is dealing with a chronic "invisible" illness? Is it because they find that this is complimentary and it will make someone feel better? Are they just vocalizing out loud what they are thinking? I'm not sure I have the answer after all these years. It's not as if they are complimenting you on as to the shoes you have on, or the outfit you are wearing or your hairstyle or glasses ... no, it's about your face, your weight, and many other assessments that register in people's minds upon seeing someone.

When I first became ill and my weight plummeted to 69 pounds, people looked at me with pity, fear, and with an uncomfortable glance. It was assumed by many that I was suffering from anorexia nervosa. I was judged by my appearance even though I desperately wanted to eat and my mind was in a state of anguish over a battle between wanting to eat, trying to eat, and excruciating and debilating symptoms resulting. I was judged, as many are, not only by those in the medical community, but by co-workers, friends, and even some relatives.

I can recall during one of my hospitalizations at this time, when every morning a nurse would wheel in the scale and have me step upon the base. I was praised if I gained a pound and reprimanded if I lost one. All of my other symptoms did not even seem to be considered as I was judged solely on my weight … how I looked. Later, when I gained weight as a result of hypothyroidism, I was assessed again and people thought that I must be feeling much better and I was over any eating difficulties that they assumed I had.

How can you barely consume any food or calories and still gain weight with many of these digestive motility diseases and disorders? This question seems to even baffle many of the medical experts.

Throughout the years, my weight has yo-yo-ed between pounds lost, pounds gained and weight stabilized. I have experienced the reactions of all perspectives from all types of people both medical professionals as well as lay people, and to this day, I am still judged by how I look. So many digestive motility patients have vented their frustrations to me regarding their weight, how they look, and the public’s reaction. It can be extremely frustrating.

To complicate the matter, however, is the fact that many of us do not reveal in public the intensity of our suffering. I am guilty of living somewhat of a private life. My public persona is such that I am always smiling, always happy and pleasant, and always camouflaging the realities of my diseases. When I visit doctors, I am typically stoic, strong, and smiling. When I am at home, however, the mask is lost in my private world of debilitating and anguishing symptoms. Although I still try to smile reassuringly at my husband, we both know that behind the smile my body is continuing to decieve me with the presence of a myriad of intense and severe symptoms that now have become such a familiar part of our lives.

Many women will wear make-up, get their hair done, and wear nice clothes just so that they will feel better about themselves, but again, much of the public views this as a sign that they are not very ill. One word or one judgemental look, can often times send someone into the depths of depression, frustration, anger, bitterness, and/or saddness.

So how can others understand when so many of us tend to hide our symptoms in public? How can others understand when we tell them what we go through, and yet, by looking at us, they would never know? This is one of the challenges that goes along with living with an “invisible” illness. Be reassured that although many people with digestive motility diseases and disorders are severely compromised by low weight, there are others who are of normal weight, a little over weight, and even obese.

I’m not sure I have an answer to the questions that I posed. I have, however, had well over 30 years of dealing with my illness to learn how to cope, adjust, and react to such statements and judgments. Perhaps it's because my illnesses have a name ... a definitive diagnosis ... that I am able to let such commentary not get to me anymore. Or perhaps it is because I am now a veteran with a history of many battles and scars from the world of digestive motility disease.

I typically use humor or deflect the focus off of me and onto them when such comments are made. In most cases, people do not mean any harm by telling you that you do look good. The frustration and anger that I once used to feel has softened through the course of these years and so I gracefully reply, “thanks, you do too!” For I am far too busy trying to survive as I continue to hold on by a thread. And I am also, far too busy counting all my blessings to be distracted by comments and judgements by people who just don't understand.

I welcome your comments and experiences on this subject.


Tim S. said...

Just as the first time I read/found your blog it was right on the mark with one of the things that had been bothering me. On days when I can go to meeting of a feelowship I call myself a member of people that I have tried to explain my illness to come up to me and make a comment like "Tim you look like you are feeling good today" or something along that line. Some days I want to go off on them and tell them "well my gut hurts so much right now I wish I could just rip it out of my body" or something like that. I have one friend that is also a member of this fellowship that suffer from chronic pain for another illness and he is the only one that I can go to and vent my feelings and know that he understands. I leave for Dallas day after tomorrow to have my first appointment with this Dr. Schiller who is supposed to be one of the top researchers in Motility disorders. I am apprehensive and a little afraid, I guess of the unknown. I know I keep saying I will call you but I never seem to think about it until I am not feeling well enough to want to talk to anyone..something else a lot of people don't understand. One of these days I am going to surprise you and actually call!
Tim Shockley