Just as oblivious as everyone else…
Shortly after I finished my training, I met my very first patient with invisible illness in what then seemed to be the most unlikely of places.
We climbed together at a bouldering gym for about an hour and had a neat conversation. She appeared healthy and fit, in fact a better climber than I was that day, executing all of the moves and completing the problems with ease. Later in our conversation she revealed she had Lupus, her past struggles hospitalized with lupus cerebritis, multiple near encounters with death and a slew of other major crises she endured and continues to endure.
I was shocked. How could this be the experience of someone who looked so exceptionally healthy.
I had less of an understanding of chronic illness then than I do now. It is still difficult at times forcing myself to wrap my brain around this phenomena. How could someone carrying such a heavy cross APPEAR so well put together and normal.
The harsh road ahead…
Extraordinary men and women with similar experiences walk among us under the radar. Intermittently bearing these crosses that many of us are completely oblivious to. Intermittently crippled by the storms of lupus, rheumatoid arthritis, Sjogrens, Hashimoto’s, fibromyalgia, scleroderma, antiphospholipid syndrome and other autoimmune diseases.
The path they must take forward in acquiring answers and care is often fraught with difficulty, uncertaintly and distress.
They are lucky the disease blows up in an obvious way and a diagnosis is established in short order.
If the stars do not align properly, it is early in the disease or vague/nonspecific symptoms are the expression of their disease constellation, they run the gauntlet of unwary providers going unheard, dismissed and god forbid labeled with a somatoform disorder or a hypochondriac.
For this latter group, it may worsen still. Friends and family can turn foe just as unwary as the physicians who were supposed to provide the support. So then then the damage is done, emotionally fractured as the sufferer questions their own sanity and continues to wander unwell seeking answers.
This is of the invisible illnesses…
They effect men and women of all ages and all walks of life. They are some of the most extraordinary people walking the planet who I am blessed to have received the privilege of caring for and interacting with.
I know it is incredibly difficult for you.
Know you are seen and heard.
As hopeless as it seems at times never give up, believe in and advocate for yourself. Keep searching for the people in your life who will love and support you. You’ve made it this far. You will make it.