Sometimes these statements make a patient feel judged or like they need to justify/prove their limitations, disabilities, accommodations or even that they do have an illness. The truth is that with these invisible illnesses, what other people see is only the tip of the iceberg….the smiles, the participation, the completion of seemingly normal tasks...someone who they think appears just like everyone else in that peer group.
What they are not seeing, however, is what is beneath the surface. They are not seeing the muscle and joint pain, the varying degrees of fatigue, the weakness, the sleepless nights, the inconsolable tears, and all the other symptoms that come with the diseases. It is this beneath the surface of the disease iceberg that we need to remember when we encounter rare disease patients...invisible illness patients..all patients.
We all have off days where we are feeling ill, not completely together, struggling with a particular issue, facing an obstacle and we put on a brave face, not letting the outside world know what we are dealing with, thinking about or fighting on the inside...our own personal beneath the surface part of the iceberg. And just as we do not want to be judged by our appearances or made to feel less in any way based on others assumptions of us, so do the patients suffering from all types of diseases.
*Rare diseases are not the only invisible illnesses. There are plenty of common illnesses that are classified invisible….chronic migraines, infertility, heart conditions, IBS, diabetes, food allergies etc