Invisible Pain – Invisible Illness
Tuesday, February 2nd, 2016
Appearances really can be deceiving. One of my favorite comedians, Billy Crystal, portrayed a character Fernando who was accurate when he would profess, “remember it’s not how you feel, but how you look!” When my parents first moved me to Houston, TX, in the summer of 1975, I arrived in the form of a 10-year old kid on crutches with Forest Gump-like leg braces below my knees. In the 70’s the prevailing term for someone that mirrored my appearance was “poster child”, because I looked like all the other little children who appeared in print media or on TV when there were telethons or other mass appeals to raise funds for a debilitating disease.
The move to Houston was truly divine intervention. I was able to be treated by Dr. Earl Brewer, a brilliant trailblazer in the area of pediatric rheumatology. The medications, surgeries, and therapies that were suddenly available to me eventually removed those leg braces and discarded those crutches. I still would walk with a noticeable limp, but as I advanced through to high school, college, and then the private sector my life and lifestyle both improved dramatically. I went from looking the part of poster child to becoming a young man who embraced driving, dating, dancing and living life to the fullest. I didn’t look like a guy who at that point had already undergone close to 20 surgeries. Appearances were deceiving.
During the nearly 16 years that I worked full-time in the travel industry, I was confronted with the frustrating reality that although my physical appearance had improved substantially from when I was a boy, I still had to battle the invisible pain of flares, fevers and fatigue. And while I may have looked to the outside world as the same easy going, carefree, compassionate soul each and every day I showed up to work, believe me I rarely felt the way I looked. Uneducated coworkers would occasionally confront me as to why some days I was late to work and moved slower than usual. They saw the same me as the day before, and had no comprehension of the invisible pain I was feeling.
That same scrutiny has become a lasting part of the cross that I still carry living with this rheumatoid disease. One rheumatologist tried to explain why my particular situation, like so many others, can be so lonely and cruel. He pointed out that when people see someone in a cast, or a splint, or using crutches it’s easier for them to be tolerant and compassionate. We agreed that if the invisible pain that I periodically suffer were to have a color, if others with rheumatoid disease would glow a neon green or bright purple while we were flaring that we would be greeted and embraced much more by a society that could empathize.
My prayer is that as we educate the world we live in, that more and more compassion and understanding will be extended to the multitude of people like me, whose outward appearance may be deceiving, as we keep fighting the invisible illness that is this rheumatoid disease.