I got to thinking the other day just how isolating this illness is. How scary it can be when all these strange things keep happening with our bodies and minds. There is no "Fibromyalgia Survivors Guide" pamphlet sitting on display in the doctors office that I have seen. Sometimes folks go through horrible terrible efforts to even get a doctor to take them seriously and believe their symptoms are real. Family and friends can tell you "its all in your head" or "get over it" and list a litany of things you must do to feel better. Since modern medicine does not know the answer surely they do! So as your body breaks down so does your mind, self-esteem, self-worth and often confidence in your own sanity.
What a ridiculous set of circumstances. In bringing a bunch of Fibro patients together the one resounding thing I hear is, "Nobody understands unless they have it." I think that is true about most things in life. Marriage, parenthood, cancer, wealth, who really knows what any of it is unless you have experienced it yourself? I am finding the longer I walk this journey the more parallels I discover to a long-successful and well-worn institution called Alcoholics Anonymous. It has already been established that recovery from alcoholism is a hard process, a daily choice facilitated by determination, commitment and support. Fibromyalgia patients are in a sort of recovery process ourselves, for surely we are not given the opportunity to choose this illness, but we do get the opportunity to choose how we respond to this illness.
An integral part of the success of AA is the sponsor. A person who has more time than you do on the other side, more experience in navigating the challenges of everyday life. Ideas on how not to "trigger" a binge and someone to talk to when there is no other way down but off that wagon. Well why on earth do we Fibro patients not have the same? A friend, a mentor, a fellow patient that will tell you to stop crying when your legs are shooting daggers into your feet and you are all but convinced they are going to fall off. A person that gets it when you say, "I have not slept in 4 days and can't remember my own name!" and does not look at you like a total loon. Someone who will listen to you wail and cry over the heartache and heartbreak of living chronically ill and does not have to fix it, does not offer you myriad solutions, but is just there. On the other end, silently listening and understanding and wrapping you up in the blanket of compassion. Knowing exactly what it feels like to be you at that moment. I think having that would surely help me. So maybe I am going to go look around and see if I can't find myself one of these!
Thanks for joining,