Living with Fibromyalgia| But You Don’t Look Sick

A friend who saw me today, stopped and asked, “Are you ok”? I gave my usual lie of “I’m ok” with a hiding the pain smile but instead of being annoyed with the question, I felt glad. Finally, somebody noticed. The fact that he finally noticed by my walk and demeanor that something was askew, wrong, and not quite right was refreshing. Call me crazy, but moments like these now make me feel validated in a strange way. Hearing that question used to make me cringe inside. I grimaced at the fact that my outward appearance rarely shows the excruciating throbbing, and mind altering pain that constantly lurks in my muscles, joints, and tissue. The radiating heat like pain or mind numbing tingling sensations that prick at my nerves. The weakening ache that so often emanates from within can never be seen. Pain is something that you cannot see. Pain is an invisible illness.

But somewhere along the way, being asked (and in turn answering) the question “Are you ok”?, no longer makes me upset. I don’t feel angry that I am misjudged, secretly criticized, scrutinized, and not believed to be a person battling a chronic and very severe illness. I rarely give thought to what people feel, say, or don’t say when they see me. Usually I’m too focused on getting through whatever I happen to be engaged in at any given moment. I’ve learned that the less energy I spend on things I cannot control, the more energy I have to get through life, one day at a time. This energy is a commodity in my world. It is something so precious to me; more precious than gold, a gift that I cherish since I most often have so little of it.

Now hearing the question and seeing the person acknowledge through their facial expression and looks of concern, validates even more for me that this monster is not in my head. Fibro is not in OUR head. We  know this. And every now and again, normal people see through the facade that we aren’t ok. Even though we don’t look sick , they see by subtle nonverbal cues and signs how much pain we are experiencing. Even though they can’t do a thing to change our circumstance, the validation of having someone else recognize that something is just not right is weirdly rewarding.

Fibromyalgia is not in my head. It is not in your head. If you are a family member, friend , partner, or acquaintance of someone with an invisible illness, please note that this illness though invisible, is real. It is present. We don’t look sick, but we are. I don’t look sick, but I am.

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