How a Doctor's Perception of Me Affects the Care They Provide for My Daughter With a Disability

People often make snap judgments about others, but I have found this is especially true in emergency rooms.

Sometimes, I take my daughter to the emergency room (ER) in various states of respiratory need, and I am viewed as a hero. I am thanked by the doctors for bringing Jaycee to the hospital and praised for my prompt attention to my child. My notes on her breathing over the previous day or two are found remarkable, and further accolades are given regarding my care giving.

It feels good to be the hero and for doctors to recognize the part I play in keeping Jaycee healthy. It is, after all, difficult to keep her breathing under control during illnesses.

Even though Jaycee is 12 years old, she is minimally verbal and rarely communicates illnesses or pains. I must rely on numbers given from her home monitor as well as observe any noticeable changes in her breathing or behavior. When I am viewed as the hero, Jaycee receives the care she needs in a timely manner. The ER goes smoothly, and Jaycee is promptly treated and transferred to a hospital room for care.

However, I’m not often seen as the hero. More than a few times, I have been viewed by emergency room staff as incompetent. They see my daughter struggling to breathe, and they assume I’m somehow irresponsible. I can tell by attitudes and words spoken by medical professionals when I am seen as incompetent, and it sticks with me for weeks and months. It causes self-doubt and makes me feel like a bad mother. I have had doctors make snide comments towards me such as, “You need to be educated on her asthma action plan if she is coming to the ER like this.”

It didn’t matter that my daughter was completely nonverbal at the time or that I had been monitoring her day and night with much anxiousness. Sometimes, no matter what I do, her breathing suddenly gets worse. Doctors don’t fully understand my efforts at home, and they assume I have somehow neglected her medical care, which is far from the truth.

Being viewed as incompetent makes me distrustful of those who are suppose to be helping my daughter in the hospital. Instead of jumping in and supporting my family through another scary illness, I’m thrown into an emotional whirlwind by the people my daughter needs care from.

On a similar note, there have been multiple times at the emergency room when I have been viewed as irrational. My daughter has needed the ER many times, but I am not one to go to it for no reason. After 12 years, I know when she is sick but can stay at home. I also know when she is getting worse and needs treatment from real nurses — not just her mommy nurse. Therefore, it really bothers me when I am viewed as an irrational mother who has brought her daughter to the ER for no reason.

Sometimes, Jaycee doesn’t look too sick when I bring her to the hospital. She has a high pain tolerance, so she may not look as bad as I describe. I’m sure a nurse sees a child watching an iPad peacefully as no reason for alarm, but looks can be deceiving. After multiple trips to the ER, I can spot when I am being treated like an irrational person fairly quickly into the process.

There have been many occasions when my daughter’s oxygen saturation and heart rate fluctuate substantially prior to her really making that downward turn in her respiratory status. When her numbers are on the low side of normal during the five second check in triage, it often gives a false impression of the situation. Clearly, staff aren’t concerned as we have sat for hours without anyone rechecking her on a monitor. More than once, a doctor has recommended continuing treatment at home without rechecking her vitals after the initial triage. I have had to speak up and ask for simple monitoring to be given. With reluctance, the doctor usually does so and then jumps into action when the problem is finally observed — hours later!

I hate it when doctors view me as irrational, because they are wasting precious time with Jaycee’s health. Much like when I am viewed as incompetent, these experiences make me feel distrustful of the medical world. The people I take my daughter to for help drag their feet, don’t do full examinations, and aren’t speedily providing treatment because I am seen as an overreacting parent.

I never know how I will be perceived by those giving emergency care. Will my daughter be given prompt attention and treatment? Will they take the severity of the situation and somehow turn it on me? Will they blow us off and act like I am overreacting? I would hope the doctors would want to be seen as advocates for my child’s health instead of an adversary. Unfortunately, I have seen both.