The "Invisible" Disease: The Story Of Patient X

woman in mask
Living life with a chronic illness is already extremely stressful. But add unpredictability, severe pain…and most of all, invisibility, and that illness can become downright unbearable.

Yes, you read correctly…an invisible disease. Which is an unfortunate reality in the life of a sickle cell patient.

Why? Some medical providers tend to misjudge patients and their symptoms because they don’t “look” like their pain level is maxing out at a “10” (on the pain scale commonly used in many hospitals and doctors’ offices). Some doctors go as far as to question if a patient’s pain is even real!

Patient X: “Worst Day Of My Life” 

On Wednesday May 4, 2011, a 30-year-old African American male, married, a father of two lovely little boys, and living with sickle cell, had an experience that he quickly described to me as “one of the worst days of my life.”

Patient X was admitted to a hospital near his home on Sunday May 1, 2011.  He was being treated for a sickle cell crisis, one of the worst he had experienced within months. But while he was admitted to the hospital, Patient X was denied the adequate amount of medication that would have better controlled his pain.

Patient X was told by the doctors that they didn’t feel comfortable giving him 4mg of Dilaudid he already knew he needed – instead, they prescribed 0.5mg of the drug. He knew what amount he needed because he’d previously been given 4mg of the medication at a different medical facility, which had succeeded in relieving his pain. After he and his wife tried for two hours to convince the medical staff, he contacted me.

I called and spoke with the hospital administrator on call.  I began to explain the concept of patient-centered care and shared the many stigmas that sickle cell patients face. She contacted another doctor, who agreed to give him at least 2mg of Dilaudid and a PCA pump (a machine that administers medicines directly into the blood stream). While these steps did not relieve all of his pain, he at least felt better. But this day quickly became one of the worst days of Patient X’s life when, after three days of still experiencing level “9” pain, a doctor came into his hospital room, announced that his pain crisis was obviously over because he was able to speak on the phone and write a note. The doctor then issued an order to stop the PCA pump.

Did it never cross the doctor’s mind that the IV pain medication was just beginning to bring his pain down to a manageable level? Why was it necessary for a nurse to walk in and say ‘If that wasn’t enough medication, why don’t you go to another hospital?”

What kind of treatment would you call this?  It’s sure not what I would call quality care, or patient center care.  Why did my friend have to plead, to no avail, that his doctor and nurse stop judging him by how he looked and start understanding his pain?

“I’m an expert when it comes to my body, I’ve been living with sickle cell disease since birth,” he said to his doctor. “Being admitted into hospitals for pain is a part of my life, and I know the proper procedures that my body needs to help bring it out of crisis.”

Because of the poor care he received, his wife began seeking out another facility in hopes of finding better treatment.

Sickle Cell: Why Aren’t Doctor’s Listening Instead Of Looking?

Sickle cell disease is an illness that is over 100 year old, and was the first genetic disease known to humankind.  Sickle cell patients often don’t look sick. Many are young, or have youthful appearances, but sometimes only live into their mid-forties. So, why did Patient X have so much difficulty getting help?

It’s very well known by now that sickle cell primarily affects those of African American decent, and study after study has demonstrated that higher illness disparities and stigmas are often related to race. Would the incident of Patient X have taken place if he were a young white male asking for adequate pain medicine? Or, was it a youth issue? If Patient X’s mother or father was the one asking for help, would they have been treated differently? Were their certain actions that he needed to take in order to guarantee more quality care? Why aren’t there more research initiatives, education and awareness? There are no easy answers.


What Will It Take?

Patient X’s experience brings up a painfully common question that seems to be asked more and more these days: Why should patients have to settle on anything less than the best quality care? Why must sickle cell patients settle for a lifetime of more pain than necessary because of a lack of knowledge and understanding of the disease?

Incidents like Patient X’s are happening in hospitals across America. His is just one out of a hundred others. Our job as a community to break the silence on this dreadful disease and to protest against the stigmas. Our job is to ask questions. Our job is to demand the quality care and pain relief that we deserve.

What are you going to do to break the silence?

By Dominique Friend, BDO Contributing Writer

Dominique Friend is an activist for Sickle Cell Disease awareness and research who currently resides in South Central Pennsylvania. She is a wife, the mother of five wonderful children and has one beautiful granddaughter. Although her illness prevented her from graduating high school, she obtained her GED and then completed post-secondary courses in Creative Writing.

Now a published author and the founder of the Sickle International Family Coalition, a international network of families, individuals and organizations, Dominique has captured the essence of her daily struggles with the unpredictability and pain of Sickle Cell Disease in her autobiography, SICKLE, A Story of Pain, Purpose and Perseverance.  Dominique has become an activist who is raising awareness of Sickle Cell Disease and advocating for improved treatment for people living with Sickle Cell Disease.

Dominique has been featured in many magazines, news articles and on television. Dominique’s outreach goes as far as Africa and other parts of the world.  She has been invited to participate in conferences sponsored by the National Institute of Health, and most recently has visited the White House and met with the President’s Special Assistant on Policies and Disabilities, Mr. Kareem Dale.

Dominique can be contacted by via telephone at 717.793.6294 or by email at [email protected]