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50 Shades of Grey: Chronic Disease Style
By Sharon Coyle-Saeed
This week, I ventured into New York City for my preoperational testing in preparation for surgery which will take place on April 11. Yikes, that just got real…real fast. As we learned last month, I have a strong double D coping strategy, denial and dissociation with my disease. This month, we were going to explore the next step in the Kubler Ross model of loss, anger. However, sometimes, life situations come about that bring lessons that may be beneficial to share, ah, the life of a blogger. Therefore, the month of April gives birth to 50 shades of grey…..chronic disease style. Is there any other way?
Here was the scenario. I went into the pre-surgical unit after traveling into the city alone (I am woman hear me roar), and surviving an unmarked taxi…go Uber! Feeling already like I won, I waited on a lengthy line just to register for the registration. When it came to my turn in line, I handed the woman my orders from two doctors, and then, “the look” happened. Oh, come on! You know that look!!!! It is the look of pity. It can cut through me like no other look I know. The look, and well-meaning receptionist said, “Wow, these are the two chief doctors here. Your case must be very serious.” I actually looked behind me, because I thought she may be referring to someone else. It was followed up with, “I don’t want you waiting here a long time.” And so it began. Special treatment, the untouchable, the pariah, the tough case, the one who makes the doctors work hard for their money, and perhaps even makes them feel like failures. Yes, I have heard it all.
On to registration. “Sweetie…”(I will let you in on a tiny secret of mine. If you want to stay on my good side, I seriously despise any pet names of this nature. Moving on. I digress.), she continues, “I am so sorry. I can’t imagine going through what you have gone through. You must be very sick, but you don’t look it,” as she snapped my hospital ID around my wrist. Dorothy, we are not in Kansas anymore. ET, phone home.
Next, came the dehumanizing hospital gown. This seriously dampens my mood, and puts me in a place I don’t like to visit. I only wear the gown during surgery, or the initial few hours in the emergency room. I change back into my regular clothing during stays, and let’s face it, blue is just not my color. Ok fine, I don’t do color. Wednesday Addams is my hero. On this stop, came the x-rays. The technician read my report, and said, “Incredible. You have so many staples inside holding everything together.” Yeap, yeap, and don’t forget the titanium, too. I can sing the David Guetta and Sia song if need be. Humor is one of my coping mechanisms….although, most of the time, I only crack myself up.
Blood work and urinalysis followed suit. I pre-warned her. “If nothing comes out, and you do not get me on the first try, it is me, not you.” With confidence she retorted, “I have been working here for 22 years, and I always get it on the first try.” Mmmmmmmmm. First try, nothing. Second try, nothing….three blood techs and 7 pokes later, blood finally flowed. “I am shocked. Never in my 22 years. You are really sick aren’t you? Well, sick or not sick, you look 10 years younger than you are,” she offered to my bruised hands, arms and shattered ego. Unfortunately, I wasn’t biting.
Last stop, the EKG. As the nurse had to gain access to certain areas on my body, my hidden self was revealed. “You are getting more surgery? That is some set of scars. Is that an ileostomy scar? How much more can they take?” she asked with a concerned look. She looked at my orders. “You are not a candidate for a laproscopic surgery. You must be high risk.” That is when my head started to spin. I really didn’t know whether it was from the vials of blood taken, or the fact that my inner soul wanted to scream out, “There is more to me than this. Who is this you speak of?”
While studying in social work school, Karl Jung and his dualistic theory is mentioned quite a bit. Good or Bad. Right or Wrong. Persona and Shadow. Sick and Healthy. Mild or Severe. Black or White. Problem is, I am not black OR white. I am 50 shades of grey. In fact, I am 50 “shapes” of grey, as my disease and its manifestations have shaped me, yet, it does not define me.
I wanted to cry out. I am a mother, I am a correspondent for a New Jersey newspaper, I am a blogger for WEGO Health, I run a support group, I am a Reiki Master, a singer, a graduate school student, and so much more. I am more than my disease. Much, much more. I am grateful for the disease for all that it has given me, and the lessons it has taught me with all it has taken from me, but, I will NEVER play the victim to this abuser, and I am my own rescuer , thank you very much.
I do realize that this IS happening. I am not delusional. I will be going under the knife in 10 days. It is a major surgery. However, it is just one of the many greys in my life. I am not a sweetie, a look of pity, a serious case, a pariah or an untouchable. I am not my IBD or its manifestations. I am a person. To quote the Elephant Man, I am not an animal (nor am I the animal of this disease), I am a human being. My name is Sharon, and I actually have never watched 50 shades of grey.
Looking forward to hearing all the wonderful things that make up YOU! We are MORE than our diseases. So, so, so much more!
Sharon Coyle-Saeed was diagnosed with ulcerative colitis in 1990. She has three Associate degrees in Psychology, World Language, and Theater. Sharon’s Bachelors is in Journalism & Mass Media with a Middle Eastern Studies minor from Rutgers University. She is currently a graduate student of Clinical Social Work at Rutgers University with a focus on Aging and Health. Sharon just completed an internship at Robert Wood Johnson/The Steeplechase Cancer Center. She is a Reiki Master Practitioner, a freelance reporter for Gannett NJ, an IET Intermediate practitioner and holds certifications in EFT (Level One), Angel Card Reading, Angel Realm Reader and Aromatherapy (Stress Management, Essentials and First Aid). To help others is her sole and soul’s desire.
3 thoughts on “50 Shades of Grey: Chronic Disease Style”
We are all human beings. We are not sweeties or whatever crap they want to call us. I have actually complained to the patient advocates at the hospital where I go when one day I got the ‘you are too young to have all this wrong’ crap. I just wanted her to know that she can’t talk to patients like that. We are all human.
I hope the last 10 days have gone well. At least Dante had Virgil to guide him through Hell, but you sound like you’re watching your own back pretty well. While preserving your identity, try not to be too hard on the help. They get exposed to a lot of pain and suffering, want to show empathy, but also want to keep from being overwhelmed. Putting patients in boxes is one way of doing that. There’s a constant tension between being an instrumentality of a health care system (whether it’s a radiologist, orderly or surgeon) with a role consistently to perform procedures thought to be efficacious and being one stranger running across another.
Chronic disease is disease that persists over a long period of time. Chronic disease can hinder independence and the health of people with disabilities, as it may create additional activity limitations. People with chronic disease often think that they are free from the disease when they have no symptoms. Having no symptoms, however, does not necessarily mean that chronic disease has disappeared. The good news is that chronic disease can be prevented or controlled through 1) regular participation in physical activity, 2) eating healthy, 3) not smoking, and 4) avoiding excessive alcohol consumption. Listed below are examples of common chronic diseases and their early signs.
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