We banter around terms that often need greater clarification and for me, one of them is the use of the term, ‘Invisible Illness.’ Can any illness that is insidious and potentially life-threatening really be considered invisible, or do people choose NOT to see what is in front of them? You can tell me how great I look, you can mention my sudden weight loss and say it with a tone that drips with obvious envy. My super short haircuts aren’t always a statement haircut or even an attempt to be edgy, as much as it was to mask my ever thinning hair loss from my serious illness and subsequent chemo-like medication(s). But, in the end, people choose what they see and, sometimes, we unknowingly reinforce this process.
When someone asks us how we are doing, our most common response is, “Fine,” or “Okay.” Rarely do we go into the nitty-gritty of the issues with our bowels and/or our joint pain, or heaven forbid, our ostomy, nor do we expound upon the side effects of our medications or our sleepless nights. One reason we lie is for social appropriateness. It isn’t acceptable to be the one who complains all of the time about stuff that makes others so incredibly uncomfortable. After all, no one was ever taught to talk about bowel issues and/or diarrhea, especially in public. But, on the other hand, it doesn’t help to complain too much anyway.
Theres a sweet spot where people only hear the complaining and easily miss the genuine emotions, pains, fears and anxieties attached to what we are saying. Not being heard is harder than not sharing and risking not being heard. Complaining also puts the onus on the other person to have to respond in some way that could be perceived as supportive or understanding and, honestly, some people just aren’t capable of that level of closeness or empathy. A friend of mine, who totally gets my disease (as much as someone who isn’t sick is able) said to me recently, “Oh, well, it is always something with you…” I know she didn’t mean it the way it came out, but it was hurtful and left me feeling as though I shouldn’t be sharing too much information with her, so I went back to my retort of, “I’m okay.”
In the end, most people often don’t understand the enormity of what we live with since so much of what we survive happens out of their site; the ER visits, seriously invasive medical tests, and ongoing medications which often border on being considered intensive chemotherapy. This all feeds the concept of our Invisibility. Honestly, people are generally so focused on themselves and what others are thinking about them, that they truly aren’t seeing the signs and messages that are being projected by others; And maybe that is okay. My disease isn’t invisible because I am not invisible. You may not see it, but I wake up with it and go to bed with it, as I have done for over 40 years, so believe me, invisibility isn’t a word I would have ever used. Remission?
Yes; But not invisible. My secretary used to say to me, “Okay, I hear what you are saying to everyone else, but how are you REALLY doing because I know what you are saying is BS” and then she would smile and wait for me to respond, not giving me the out of hiding behind the generic, “Okay.” It is the very rare and caring person who can break through our superhero force fields and willingly ask to see us without the cape and shield.