To the Doctor Who Dismissed My Pain Because I Appeared 'Normal'

I remember it as if it were yesterday. Amidst the energy draining fluorescents and the meticulously bland off-white walls, I lay with an IV in my arm, slowly dripping saline solution into my dried-up veins. An
amassment of immense and searing pain conflicts my weakening body. Pain is something that is customary, rather a normal occurrence for me because I suffer from a debilitating genetic condition called Ehlers-Danlos syndrome (EDS). EDS is known as an invisible illness because those of us who have it often look completely normal and healthy. This and the fact that I am used to masking my pain with a foolhardy smile, brings me to the arrogant and smug doctor I saw.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

I’ve dealt with many doctors over the years, but this doctor’s repugnance tops them all. From the very nano-second he laid eyes on me, he didn’t believe I was really in excruciating pain. He judged me due to his ignorance about EDS and by my appearance and instantly labeled me as a drug-seeker. He thought I must be addicted to prescription narcotics. All I wanted was relief, even if it was a tiny fragment.

I read the patient bill of rights for the first time during this experience, and what really caught my eye was the fact that patients are entitled to adequate pain management/treatment, which I wasn’t receiving by any means. With the help of my mother (my biggest advocate) I desperately tried to remedy this situation by invoking the bill of rights, only to be shut down, again because I was supposedly there seeking drugs. I ended up leaving the hospital soon after, still in horrible pain as well as emotionally scarred from the way I was treated and disbelieved.

That doctor ended up leaving the hospital in part due to this incident, although I believe he still practices somewhere. I met with the higher-ups at the hospital and we discussed the grievous way I was treated. They apologized, and I ended up trying to work with them to come up with a pain management plan for when I inevitably must return to the hospital in the same excruciating pain. Though they apologized and tried their best to remedy this situation I still felt humiliated and dejected.

I urge patients to be fully aware of their rights. Though it didn’t help me in this situation, I know it is very important to understand what to expect from a hospital visit. This experience left a sour taste in my mouth and although it has lessened with time, it has never fully gone away. That doctor is the reason I am so adamant about spreading awareness about Ehlers-Danlos syndrome. The more doctors hear about it, the better they will understand it and maybe it will help save at least one person from having the same experience I had.

I urge doctors not to jump to the wrong conclusion about someone based on limited knowledge and the appearance of the patient. I am used to covering up my pain and acting as if everything is fine when I am being torn apart by pain. Many people who have chronic illnesses are used to dealing with pain, so they often do not act the way someone who is occasionally or rarely in pain may act. Remember to always be empathetic and open-minded; work with your patients – not against them.

Getty Image by MongkolChuewong