We’ve all been there. Maybe you encountered a former co-worker or were spotted by a fellow PTO member at the grocery store. You exchange pleasantries and they ask that inevitable question: “How have YOU been? I haven’t seen you in a while. How are things going?” Now, you are faced with THE question: Do I answer the question with the undeniably expected “Oh, fine” and enable “said” individual to go about his/her day…. OR….. do I actually allude to the truth? Do I lower the veil, pull back the curtains and reveal what is REALLY going on.. even if just a little? Or do I maintain that stoic facade, determined to avoid the blank stare that comes after your admission that you have Fibro. “Oh, that’s that thing from the Lyrica commercial!” “So, it’s like you feel sore sometimes or something, right?” Or you get that continuous series of nods that lets you know that they have NO… and I mean ABSO-FREAKING-LUTELY NO idea what your experience is, how harrowing the pain is that you endure, what crippling effect constant, unrelenting fatigue has on a person’s life when it just won’t give up and can’t be scheduled or even combated. To date, my favorite response is, “So, do you have to take medicine for that … or something?” Now, granted, I give the person credit for asking… but the inquiry really wasn’t one of curiosity, to discover what my reality is, but was dismissive, as if to say “Oh, well…It’ll be okay.” And I don’t want to sound like one of those bitter, “you-can’t-win-no-matter-what-you-say-or-ask” individuals but here’s MY truth: I’ve given birth without drugs of any sort and I’d trade my morning Fibro pain for that any day because, at least, there’s an end in sight, as regards labor pains, and a beautiful reward at the end. No matter what medicine I take for my Fibro pain, it doesn’t remove it completely. I am grateful to just have it silenced enough so that I’m not rocking back and forth or considering really unhealthy alternatives like chasing an entire bottle of Ibuprofen liquigels with a bottle of infant tylenol and “seeing what happens.” Fibromyalgia is complex and its symptoms vary from one fighter to another. But FAR too often, when I DO “take the leap” and tell someone that I’ve been having a difficult time because of a Fibromyalgia flare, the statement is met with an “Oh, please… Who doesn’t have aches and pains?” type response. However, I’ve found that mentioning other illnesses, with similar symptoms and struggles, elicits far more compassion and understanding.
So, here’s my admission: When I DO take the risk and mention some aspect of what I go through to someone who isn’t a dear, close, personal friend, I tell them that I have Lupus.. .and then mention Fibromyalgia, secondarily. Why? Why would I do that? Why would I pass up on the opportunity to inform the person and educate them regarding how extensive Fibromyalgia can be and how far-reaching its wicked tendrils? Because of the guilt – the guilt that I feel for not being enough, the guilt that is compounded by the vacant stares and assumptions that I’m just a complainer who needs to suck it up and do what I need to do and stop making excuses. It’s because of the look that I get when someone without any clue that I cry because of the pain that I suffer from, that I pace the floor at night when I can’t sleep, unable to use the time wisely by ironing because standing in place hurts so badly that I never make it past a few pieces without needing to sit down, the shame that I feel for not being 100% even though my effort each day is nothing less. I give in to it… and I want, for just one moment, to be viewed compassionately and not judgmentally. So, there’s my dirty little secret. I’m not proud of it. But, maybe, by sharing this, I’ll help someone else, who can’t bare the stares, feel a little less alone.