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How I Related to This Important Memoir About Invisible Chronic Illness

I don’t want to be here. I’m in the emergency room. It is a Friday night at 6:00 in the middle of a dreary San Francisco neighborhood. I knew this was going to be a long night. I’ve been here before, a few months ago. For this visit, my ulcerative colitis (UC) flare is at its year-long anniversary. Unknowingly, I was only about halfway through it, but I would get out eventually. In this state, struggling was my best friend. My physical world was reduced to my bedroom and living room. Whatever I could do during the day would be dependent upon a force larger than my will and that force was my autoimmune illness.

Who wants to be in the emergency room? Did I want to be in a state of such pain? Full of prednisone and suffering from the relentless, crushing pain at the base of my skull, the swelling of my abdomen, so sore that I cannot lay down on my stomach without pain? Not me. No thank you.

What I didn’t expect was to have my struggles ignored. Having the emergency room be a place where I would be dismissed and essentially laughed away. After four hours of waiting in the lobby, sitting next to a man who created a fake identity for the receptionist, I was finally called back to get an exam. I was glad to be leaving the waiting room because the smell of bodies that hadn’t been bathed in weeks was getting thicker as more and more people arrived throughout the night.

I followed the nurse as we walked from the lobby, underneath the piercing brightness of fluorescent lights that coated the ceilings of the seemingly endless hallway. The sharp lights illuminated each patient’s face, each one holding a different level of pain. I tried to keep my eyes forward, following the nurse’s path. She finally brought me into an exam room, where my roommate was an elderly man who I could smell from hallway. I don’t want to be here. There are at least a hundred places I’d rather be than feebly walking towards that hospital bed.

After putting on a hospital gown, I waited another hour and tried to ignore the cries of my roommate for his spaghetti dinner. Finally, a resident working the night shift showed up at the end of my hospital bed. I was deeply relieved when he started speaking, although I couldn’t focus because of the pounding in my ears and the tenderness of my abdomen, feeling like it was about to burst open at any moment. But his words illustrated progress in my hospital stay. At the end of his answerless lecture, I asked a question. I was worried about another symptom I was having aside from the headaches that were taking my breath away. I asked about the integrity of my bowel walls, and if I was at risk for sepsis or toxic megacolon.

He smirked at me. I didn’t understand that facial expression, after I had asked such a seriously worrisome question. He said, “Don’t believe everything you read on the internet.”

It was in this moment that I knew, he didn’t really care about the thing called “bedside manner.” The entire concept of what it meant to be a doctor, to help and to comfort those who are in utter desperation for your help. Not to dismiss. I never got an answer to my question. So, I left the emergency room with some over-the-counter pain medication for my headaches and brought with me the shear pain that each one of my nerve fibers was continually radiating throughout my body. But hey, I shouldn’t believe everything I read on the internet. My symptoms were caused by what was a serious UC flare, with side effects from the prednisone. Debilitating, but not able to be fixed until my immune system quieted. The problem was, I looked to the internet for answers about my symptoms, especially when I wasn’t getting any from my doctors.

In Abby Norman’s memoir, “Ask Me About My Uterus: A Quest to Make Doctors Believe in Women’s Pain,” she explains how she was dismissed by numerous medical professionals, experiences I could relate to immediately. As a female patient with an invisible and chronic illness, it felt like we may have taken some of the same paths through those fluorescent-lined hallways of numerous hospitals — all in search of a diagnosis and for someone who would hear us.

On the inside cover of her memoir, I find a powerful statement: “Women’s bodies have long been the battleground of a never-ending war for power, control, knowledge and truth.” Before reading “Ask Me About My Uterus,” I never realized how deeply this statement touched my medical journey. It reminded me of the memoir by Julie Rehmeyer as well — “Through the Shadowlands” — and her mysterious symptoms that no one could understand. She searched for answers on her own (through the internet) and in patients’ communities. Julie’s body was a battleground for knowledge. Abby’s body was a battleground in the same ways that mine has been — mainly for truth.

Norman begins with a historical context of how women have long been dismissed and ignored as patients in the healthcare system of the U.S. In the present day, this is still occurring much more commonly that one would think, particularly with female patients who have invisible conditions such as my case with ulcerative colitis or with Norman’s case of endometriosis. She continues to explain her encounters with healthcare professionals and the apathy she received on so many different occasions. An example she uses near the beginning of her memoir is when she brought herself to the hospital, because she knew something was very wrong in her body. She says, “…the pain had exhausted me to the point of surrender.” This was a statement that I could’ve said myself, before I walked through the doors of that emergency room in San Francisco. There is a stubbornness that I feel in Norman’s words as she fights her battles alone. Sometimes she fights while lying on the floor, writhing in pain, because after the extent of dismissal by doctors, why would she want to go back and be given no answers once again?

For patients with chronic illnesses, one of the most complicated burdens to bear is the difficulty by which we try to explain ourselves to others. Particularly, trying to find words that will adequately describe our pain. I’ve struggled with this since my diagnosis in 2009. There do not seem to be words in the English vocabulary that can precisely describe what it is like to have so much physical pain in your abdomen that it feels like there is a serrated bread knife running down you from your sternum to your pubic bone. So, I would rely on such analogies and images that people can “almost” understand. Norman explains her difficulty in trying to explain her pain when she was asked to rate her pain on a scale of 1 through 10. She asked, “What did the nurse think a 6 was? What would the doctor think that a 6 should be? Tears of frustration came. What was the point of this pain scale if they weren’t going to believe me anyway?” Her internal dialogue in this instance reminded me of another occasion in my medical journey of dismissals.

I was in an infusion center. This is where your friend, spouse, grandmother, father, etc., go when they need chemotherapy. When an old man is getting a blood transfusion and needs to sit for hours upon end. Where many of us chronic illness patients go when we need IV therapies. It can be a particularly painful place to be; being surrounded by such pain and such vibrant reminders of your condition. I had IV treatments for about eight years before they stopped working. I was used to being in an infusion center every few weeks.

Once, during a UC flare, as one of my medications was beginning to stop working, I was in a lot of physical pain. At the end of my infusion, the nurse asked me where I would rate my pain on that same old scale between 1 and 10. I said 7. The first number that came into my head, because relatively, to all the other days in that period of my life I was suffering, but I could put on a nice face and hide it well. She said, “We can’t let you go home unless you rate at a 4 or lower on the pain scale.” I looked at her and said, “Well, then I’m at a 4”. I wanted to go home. She wasn’t going to offer me anything for my pain anyway, so why even tell me this inanely arbitrary requirement? It was ridiculous. That pain scale is ridiculous, and just like Norman, I had to think of the reaction that the nurse would have when I responded to her question again. After I said a 4, she let me go home. But if I was honest with myself, I was most definitely at a 7.

Norman’s memoir has inspired me in several ways. I’ve learned that speaking up is crucial in order to get any semblance of proper medical care, even though there will always be those few healthcare professionals who smirk at you in the emergency room and tell you not to believe everything you see on the internet.

I learned that finding a community of other people who may be going through similar health-related situation as you is priceless. Reaching out to medical communities on Facebook and reading other patients’ novels has been a true gift to me.

“Ask Me About My Uterus” stands as an illuminating lens into what it is like to have an invisible and chronic illness. Norman’s memoir meant so much to me and I hope that maybe one person, who may know what it feels like to be ignored by a medical professional, can relate. You may have been having a flare and the nurse asked what your pain was in that moment. Not understanding the concept of chronic pain, you may lie to get the treatment that you need. You may have such severe pain that no one understands your suffering, until you reach out to someone like me. Someone who is typing this essay, but feels the dull and intense ache in her finger joints. The arthritis that no one can see, but she knows is a sign of an ulcerative colitis flare. Something that can’t be wished away, but can be heard through the power of her story. Abby Norman’s story holds the power for other women like myself to speak up and say, I’m listening, and I will not dismiss your struggles solely because I do not care to try and understand them.

Follow this journey on the author’s blog.

Getty image via monkeybusinessimages.