I was diagnosed in May. But I have told very few people. I needed time to process, to figure things out, to learn what would have to change, what would be the same. I was also ashamed, frustrated, and angry. But for the reasons I listed at the bottom I wanted people to know.
Here is what I posted to Facebook today: I have a syndrome. I don’t talk about it much for a couple of reasons (1) I don’t want my life or interactions defined by it and (2) there are a fair number of people who believe it is all in my head or the newest designer disease. Some days, you wouldn’t know it. Some days it is hiding just beneath the surface. Some days, especially if you know me, you can see it. In my eyes, in my step, in my limp, in my fatigue. It is fibromyalgia and it is a part if me.
It is migraines, and insomnia. It is depression and it is GI problems. It is pain at certain gentle touches, it is aches in large muscle groups, and it is nerve pain - which cannot be stopped or relieved, because the signal is just wrong. It is exhaustion after 14 hours of sleep. It is tremors and weakness in hands and hips. It is hypersensitivity to light, sound, and smells. It is pain, everyday, all the time. All the time.
You can’t see it, yes I look just fine. No, you can’t catch it. Yes, I am too young to have that limp. Yes, I look tired most of the time. Or hung over depending on who says it. Yes, it seems hilarious to you that I drop things at the wrong moments - I must be quite the klutz. No, I don’t do any of it to get attention. Quite the opposite. No I don’t really want to discuss the thousand homeopathic remedies.
Some days, the comments of others - particularly in large venues where you believe you will never see me again, and where you must think I can’t hear - are very disheartening. They are hurtful. They are mean. I am not out if shape, or lazy. I am bit making this up for attention or fun.
Most days, thought I am surrounded by love and hope. Helping hands, gentle hugs, loving words. Amazing family who makes it possible to keep up, to let this NOT define me or my life. Who support my choices. Who allow me to be a mom, wife, daughter, niece, aunt, friend, engineer, photographer in the best way I can that day. Even if it is different or less than just the day or hour before.
But I want people to know, I want them to know so that if they or someone else they know experiences this, they know it isn’t all in their head, they know that it isn’t fake. They know they aren’t alone. I want people to know to spread awareness, to foster discussion, to push for a diagnostic test that is deterministic so that those that suffer this at its worst can get the support they need. Dear Lord, I would love to see research to define and understand this and cure it, forever. There are many paths of treatment but most are only partially effective, not highly studied for long-term effects, and carry a litany of rather scary side effects.
We don’t know what this is, what causes it, whether it is genetic or degenerative, neurological, rheumotological, or preventable. It is Fibromyalgia and it is pain. And it is a small part of who I am.