Invisible Pain

I had to visit a healthcare facility recently to get pain medication to help me manage chronic pain associated to a rare connective tissue disorder called Ehlers Danlos Syndrome. Because this disease is so rare, not many doctors know about it. Perhaps, I would be the first patient they have met with EDS, as it is commonly known. It took me 28 years of my life to get an actual diagnosis albeit suffering from the complications since I was born. So I went to this health facility since I have been getting my prescriptions for more than a year now.

While I was at this health facility, I see a new doctor since the one whom I normally sees has a long que waiting at his door. I walk in, go straight to the point, mention what I was feeling, I even referred him to my old patient notes for the medications that work for me. However, this new doc decides that I have a possible infection and sends me to the lab for tests that I did not need. Being a good patient, I go along with the suggested treatment plan. Needless to say, the tests came back negative. The doc decides to prescribe the pain medication that the previous doctor had indicated in my file however he underdosed me.

In the middle of the week, while at a training, the pain that I felt became so unbearable that I had to run out to another health facility that gave me injections to give some relief. How I wished the new doctor had listened to me and followed what was noted in my patient history. So much time would have been saved, and I wouldn't have gone through unnecessary pain.

Moral of the story: DO NO HARM....LISTEN TO YOUR PATIENTS.

#EhlersDanlosSyndrome

#EDSawareness

@ehlersdanlossociety