A decade ago, the word fibromyalgia didn’t exist in my vocabulary. To be honest, my relationship with illness was that I was never ill in any serious way. I lived to work and study, which eventually jeopardized relationships. That way of functioning, however, was what I was taught growing up. You were suppose to disregard all else in favour of work, whether physical or mental.
I saw my body and my mind as tools to be used relentlessly. I would work from 6 a.m. to 2 p.m. at one job, then jump in my car, drive one hour, and then work from 3 p.m. to 11 p.m. I worked every holiday–a habit that I did not break until I moved to Italy. I volunteered to work when someone else didn’t want to, or called out, or whatever. I made myself overly reliable, and everyone knew they could ask me to step in to help at any time.
Work trumped all else.
So, what happens when a person who self-defines through excessive work (“workaholic”) loses the ability to overwork or even work? In Rome, we say sono distrutta/o (“I am destroyed”) when something happens that is overwhelming and/or devastating. I think this expression is apt: you feel a huge part of you has been destroyed. There is a shattering of the self, a destructive blow to one’s inner worth.
However, the blow doesn’t happen just once. There are many blows, one for each thing you realize that you can no longer do. Moreover, the blow aren’t just internal. You receive external blows that land in the form of judgement, dismissal, and utter disregard…even from the people for whom you once bent over backwards to help when you were well.
That, sometimes, isthe harsh reality of having this illness. Some people may begin turning their backs on you as they come to realize that you can no longer do what they want/need. Although such experiences can hurt, they offer you the great opportunity to begin understanding who your real supports are, who you can really trust, and where you actually stand.
Knowing where you stand with yourself and with others, I think, is the one of the most fundamental aspects of beginning to restructure your life after any sense of loss of “self.” In an earlier post, I wrote about reality checking, i.e. making certain that you understand what is happening in you and around you. Knowing where you stand with yourself and with others is, in essence, reality checking. One might even call it being mindful to self and environment. Regardless of what you choose to call it, simply do it.
First, take stock of you, what’s going on within you. Open yourself up to a non-judgmental inner dialogue, and encourage yourself to express all that is challenging you when it comes to your illness and the impact that it has had on your life thus far, or even what fears you may have about the future. Be honest with you.
Second, speak directly with those around you. Open yourself up to non-judgmental external dialogues, and encourage others to express to you how your illness challenges them, what scares them about it now and what they worry about in the future. Of course, make sure you express your thoughts and feelings as well.
Remaining in a non-judgmental stance is vital, in my opinion, to understanding 1) where you are, 2) where you are going, and 3) where you might prefer to go instead. It keeps you here and now, but with a distance that allows for some objectivity about your life.
It’s true that having fibromyalgia can suck the life out of you. However, you do not have to allow fibromyalgia to suck you out of life. Yes, things are different now. Yes, you have no idea how it’s all going to work out. Yes, you are scared. All of those things are okay. Your feelings are you feelings and they should be owned you.
Still, having fibromyalgia isn’t the end of the world. It may be an ending of a chapter of your life as you knew it. And now you can write a new chapter.