The medical community doesn’t talk about the grief. They don’t mention that at some point you’ll realize just how much your life has changed and it will hit you like a ton of bricks. They don’t talk about the despair and the anger–oh how they don’t mention the anger. And if, like me, your doctors have done fuck all for your health, telling you instead that “it’s all in your head” or “if the meds don’t work then it’s not fibromyalgia” forgetting, of course, that the “big 3” meds only have about a 35% rate of significant symptom improvement, then there’s a lot of anger and a lot of grief.
Within the chronic illness community those of us who deal with it on a daily basis talk about the grief. We understand. We’ve lived the horror where one morning you wake up and realize you’ve lost MONTHS or YEARS of your life and you don’t know how to get that time back or if you ever well. There’s not even AD or BD (After Diagnosis or Before Diagnosis) because you may be dealing with doctors who haven’t even diagnosed anything yet. Or, they’ve lumped you under one diagnosis and refuse to look for others.
The grief hit me about a month ago when I realized that I had completely lost last fall, winter, spring, and most of summer. I went to work in the office of my day job full time in September due to some staffing changes, and as soon as I did, my fibro flared and I couldn’t do anything except work and try to keep up. All the little projects, all the to do stuff…left undone.
Grief hits hard and fast. As someone who has had “do it all/take care of it all” as part of her identity for so long, I tailspinned. I won’t lie. It hurt. But just as the five stages of grief hit when you go through the loss of a loved here, here too, you need to acknowledge the grief and work through it. You need to be gentle with yourself and support yourself. And you need to be open to looking at your new normal. I’m not over it. Grief is an ongoing process. Some days you’re fine. Others you’re not. But it also is something you need to be aware of and allow to happen. Only then can you try to find a new way through and take care of you.
