“I told you something was wrong”. Six simple words…straight forward words, yet very powerful. Those six simple words haunt me and send chills down my spine. Simply typing those words gave me chills. Those six simple words constantly interrupt my thoughts, and the sound of my voice whispering those words plays on a constant loop in my mind…like the words and rhythm to my favorite song. But, unlike the words and rhythm to my favorite song, each time those 6 words are replayed in my mind, I get a sick feeling in my stomach. Along with the sick feeling in my stomach, my heart begins to race and I am mentally taken back to the day just a few short weeks ago, that lead me to whisper those words.
Imagine yourself arriving to a party at your favorite spot. When you arrive, you notice that you are one guest among several hundred. Excited to be invited, and completely unconcerned about the size of the guest list, you can’t wait to make your rounds in the party. As you stroll through the crowd, you notice lots of familiar faces. You run into several high school friends, colleagues from work, family members, and a host of casual friends. In fact, you run into so many people, that you feel completely at home…almost like you’re at a family BBQ. Before too long, you’re on the dance floor dancing the night away. The music is bumping and the air is filled with laughter. As your body sways back and forth, you notice that the base from the music is pounding on the same rhythm as your heart beat.
Suddenly, and without warning, your shirt bursts into flames. Immediately, you begin screaming in pain. As loud as you can, you shout “PLEASE HELP ME”! Through the flames that have completely engulfed your shirt and have now spread to your hair and pants, you notice that the people around you on the dance floor are still dancing. Horrified by the intense inferno that has now consumed most of your body, you scream in pain while patting yourself to try and put out the flames. Despite the scene you are creating, no one offers you assistance. Confused by everyone’s inaction, you start trying to convince yourself that everything happening is a dream. Aloud, you start repeating “this is not real, this is a terrible dream”. Before you can repeat yourself, the intense pain from the fire on your flesh quickly reminds you that what you are experiencing is in fact real. Desperately in need of help, you start running up to people yelling “PLEASE HELP ME. I AM ON FIRE. THIS HURTS SO BAD. PLEASE HELP ME!” For some reason, the people you approach for help quickly walk away as they see you approach them. One by one, the people you approach asking for help turn their backs and walk away without even acknowledging you. It is almost as if everyone is looking straight through you. In one final desperate attempt, you grab the arms of the next person you see and yell “PLEASE HELP! I AM ON FIRE AND I NEED HELP”! The person turns to you with a confused facial expression and asks “if you’re on fire and need help, why aren’t you rolling around on the floor”?
This scenario seems almost impossible to imagine right? It is very difficult to imagine a situation in which people would ignore a person desperately in need of help, right? Well friends, I am here to tell you it happens…quite often actually. See, within the scenario I gave above, there was an important detail that was easy to miss. The asks for help were disregarded because they didn’t look like the asks for help that the people in the room with the ability to help were accustomed to seeing. BOOM! Mind blown yet? If not, it should be. Everyday someone chronically ill or in pain is ignored because they don’t look sick, are not acting in enough pain, or have conditions that lend themselves to addiction.
Recently, I was reminded of regardless of my education, IQ, connections, or etc., on any given day I can EASILY be added to the number of chronically ill people ignored by the very people paid to help. As many of you know, I recently spent 6 days in the hospital due to a surprise Chron’s flare. While I have been hospitalized several times during my life, this hospitalization was one of the worst I’ve ever experienced. Friends, in the 35 years I have been on this earth, I have never felt as helpless, vulnerable, ignored, disrespected, disregarded, and invisible as I did during my recent hospitalization. Very few things in life are as frightening as being ignored when you are alone, in pain, vulnerable, and desperately in need of help.
On the afternoon of October 3, 2015, I was sent over to the Emergency Room by my GI as a direct admit. After several hours of passing blood clots rectally, I had woken up from a nap completely unable to stand due to severe right side stomach pain. Concerned about an obstruction given my Crohn’s Disease, my GI told me he wanted to have me admitted into the hospital for a few days. As my GI requested, I packed my bags and immediately went to the Emergency Room. After a few minutes in a holding room, I was taken to my inpatient room. I was quickly given pain meds and told the house GI would see me in the morning.
The following morning, I was greeted by my GI’s fellow. I knew immediately we would have an issue. The GI fellow stormed into my room and without an introduction said “I see you were just here in August for the same issue. It’s my understanding that we couldn’t determine the source of the bleeding and everything checked out fine.” I quickly replied “actually no, that is not what happened.” Before I could continue speaking, he interrupted and said “listen, here is what I think happened. I think today you started bleeding again, and when you saw the blood, it triggered some anxiety. That anxiety then triggered fibromyalgia, and the fibromyalgia is the reason for your stomach pains.” Completely insulted by what was just said, I was speechless for the first time in 35 years. Completely dumbfounded and unable to speak, I allowed the nameless doctor to finish speaking. As the nameless doctor spoke, I took diligent notes on my iPad, to capture every word he uttered. He seemed concerned about my note taking and asked “what are you doing”? To which I replied, “taking detailed notes because no one will ever believe what just happened”. Completely oblivious to my response, the nameless doctor continued speaking. “So, I really think you are just fine and need to work on calming yourself.”
When it became clear that the nameless doctor was approaching the end of his thoughts about the reason for my hospitalization, I took a loud and deep sigh. As intended, the sigh signaled to the nameless doctor that I was done listening to him talk and made him immediately stop speaking. Once the room was completely silent, I said “Dr. Whatever Your Name Is, what you just said makes absolutely no sense. It doesn’t make sense clinically or practically.” He quickly replied “what, what do you mean?” I replied, “first of all, fibromyalgia has 18 pain points in the body that are used for clinical diagnosis, and NONE of them are in the abdomen. Also, I wasn’t aware that anxiety could trigger dagger like stabbing pains in the right side reminiscent of the pain one feels when their appendix ruptures. Please show me a case study, journal article or something that proves what you just described has ever occurred.” The nameless doctor was clearly caught off guard by my quick response, so I used his shock as an opportunity to continue. I said “listen, you have no idea the hell I have been though just to find the energy to come here. So, I will not use the little energy or patience I have left to lay here and be insulted by a doctor that clearly has not read my medical record and seems to think we are still stuck in the 1800s. This is not The Yellow Wall Paper Continued. So, please leave and bring back another doctor that will take the time necessary to actually find out what is wrong and come up with some solutions.”
Visibly irritated by my words, but undeterred, the nameless doctor said “listen, the hospital wants to do a flexi-scope, but if I am going to waste time putting you to sleep, I want a full colonoscopy. So, either you agree to a full colonoscopy and the risk associated with the anesthesia, and do all the prep that comes along with it, or you can go home on some pain meds and follow up with your own GI in a few weeks”. Before he could finish, I interrupted and said “what, wow, so this is a waste of time. Let me make sure I understand, you are telling me my only options right now are: 1. Agree to a full colonoscopy and do the prep which I feel you are suggesting as a scare tactic or attempting to use as a threat; or 2. Go home in the same condition I arrived in only with pain meds and follow up with my doctor in a few weeks”. The nameless doctor quickly interrupted “listen, I think you are fine just a little excited but if you like we can run some tests. But, I am not doing any test unless I can get a colonoscopy.” Friends, that last sentence sent me to my breaking point. I sat up in bed, looked the nameless doctor in the eyes and said “you listen to me right now. This is not the ‘you show’. You do not just order me to do what you want as a way to scare me into conformity. Maybe you forgot how this works so allow me to remind you. This is my body. MINE. You will not tell me what you will and will not do. You also won’t scare me into conformity. If a colonoscpy is medically necessary, fine I will agree to it. But, I will not have it used to scare me against staying and pushing you to find out what is wrong with me. As my doctor, you make recommendations and we reach a solution as a team. But, clearly you don’t understand your role on this team. So, I will gladly relieve you of it. Discharge me immediately or send me to another hospital because you and I are done. I am telling you something is wrong and I will NOT be ignored. I will not sit here and wait to get sicker and then you have my blood on your hand. NO THANKS! Draw up the paperwork right now to send me to another hospital or home, but you and I are done. The next time I see you it needs to be regarding my discharge paperwork”.
My words and the venom behind them must’ve hit the doctor like a lightening bolt. He turned pale and abruptly left the room. Within an hour, he returned with 2 doctors and a nurse practitioner in tow. As they entered the room, I sharply said “I made my ask known to Dr. No Name. Since this hospital is clearly incapable of listening and treating me, I want to be transferred to another hospital. If it is your position that you cannot do that, I need that in writing and I want to be discharged so I can take myself somewhere else”. One of the doctors quickly said “no, no. Now that is not necessary. The nurse practitioner said she is very familiar with you and for you to be complaining something has to be wrong. So, we are here to show you that we are committed to finding out what is wrong.” I quickly replied, “I appreciate that, but Dr. No Name is no longer able to participate in my care. He can sit in the room for the sake of learning, but he and I are done as patient/doctor. Do you all understand me? Also, the nurse practitioner is right, something IS wrong. I am in extreme pain and bleeding, there is something wrong”.
After a lengthy discussion, I agreed to a colonoscopy and biopsy with a second test if the colposcopy did not help determine the reason for my bleeding and pain. Friends, before making it out of the operating room after the colonoscopy, I was awakened by the nurse practitioner as she said “honey, you were right. The exact location you told us hurt is the exact location where we found a bleeding ulcer…your cecum”. As she finished her sentence, I used my remaining energy to mumble “I told you something was wrong”. The nurse practitioner quietly replied “you did honey, you did and we should’ve listened”. The nameless doctor stood silently next to the nurse practitioner and stared at the floor.
Friends, what I experienced during my recent hospitalization is not something I would wish on my worst enemy. I was at the mercy of a doctor that refused to see past his on bias…almost to my detriment. The biopsy results a few days later showed ischemic colitis, in addition to my Crohn’s, which is very serious. I shudder thinking about what could’ve happened if I was not as persistent as I was…but also what has happened to others that were not as persistent. It is horrible and frightening to desperately need help but be ignored by the very people with the expertise to help. What’s worse, is to also be insulted, demeaned, and disrespected…for simply needing help. I share my experience to show people that the issue of chronically ill patients being ignored and ridiculed is VERY real. I also share my experience to say that I will NEVER stop speaking up for myself and others. I notified the CNO of the hospital about my experience and requested a meeting with the hospital administrators. The way I was treated cannot be undone, but I can help to ensure no one else is subjected to the horror I endured.