“Dear God, I want to thank you for being close to me so far this day. With your help, I haven’t been inpatient, lost my temper, grumpy, judgmental, or envious of getting one. But, I’ll be getting out of bed in a minute, and I think I’ll really need your help!”
I stumbled across this prayer while reading a Kindle sample of the book “You Don’t Look Sick: Living Well With Invisible Chronic Illness,” by Joy Selak and Dr. Steven Overman. The prayer was sent to Ms. Selak by a friend with fibromyalgia–a condition that I know well. Nevertheless, neither fibromyalgia patients, nor any group for that matter, can stake any special claim to this prayer, as it has universal appeal to each and every one of us. Anyway, the prayer, though humorous and most mornings, all too appropriate, is not the real reason for this post.In November 2010, I began a blog post titled “You Don’t Look Sick,” much like the title of the book. The post was in response to yet another “but, you don’t look sick” encounter that occurred earlier in the day. In that particular encounter, I was just getting out of my car at the grocery store where I’d stopped to go to the pharmacy. Before I could get both feet on the ground, a woman, that I did not know, violated what any reasonable person would agree was my personal boundary. One of the store managers sheepishly stood behind her. (I knew him well.) Pointing her little bony fingers in my face, she said to him, “See what I told you. She is one of those people illegally parking in spaces reserved for disabled people.” You see, in my haste to get to the pharmacy, I’d forgotten to put up my hang tag. Dennis, the store manager said, “Lydia, would you please use your hang tag?,” and he turned around leaving me to deal with the still unsatisfied and irate woman.She proceeded to accuse me of illegally parking with someone else’s reserved parking hang tag and threatened to call the police and more. I made a sincere effort to calm the lady, but there was no reasoning with her. Finally, she uttered the words that I’ve heard time and time again, “You don’t look sick!” so that tag cannot be yours.” At this point, my patience and attempts at reason were spent and I slammed the car door and stormed into the store, before I said something that I’d surely regret later.Long after I returned home and the immediate sting of the incident had passed, the woman’s words continued to reverberate in my mind. I have no doubt that there are those who will read this post and consider my response as unjustified, overly sensitive, and in the category of ‘making a big to-do about nothing.’ For those without an “invisible chronic illness” or with no contact to one who has such as illness, it is often difficult to understand what it is like for those of us who do. I mean, who can blame you when there are patients who are still confronting doctors who refuse to acknowledge their condition because it cannot be substantiated by x-rays, CT scans, MRI’s, blood work or any other means of diagnostic tools. The underlying message becomes, in order to be deemed “sick,” there must be objective evidence supporting your illness; for example, a broken limb or a bald head (indicating a potential chemotherapy recipient or cancer patient). The problem is further compounded when pain is the primary symptom because there is no objective way to measure it.On its’ face, “you don’t look sick,” (often with the emphasis on the word ‘look’) is seemingly innocuous and usually said with no malicious or bad intent. Nevertheless, to those of us in the throes of a chronic, invisible illness; this otherwise harmless statement, raises yet another obstacle in the fight against the illness. If wishes were true, I’d gladly turn over both the hang tag and the parking space.
Not since I have been sick. For many reasons, I withdrew from my friends, because I thought that I was protecting them. In hindsight, I regret it. I would not have been able to (still can’t) provide a balanced relationship, but especially when you are really ill, you need their friendship–if only for connection with the real world. Blessings.