No one understands. No one knows unless they walk in my shoes. The world wants more than I can give. Everyone says to pull up my bootstraps. And so begins the discussion of Facebook groups about Fibromyalgia and Lupus.
Before I work today at what I'm too tired to do because of fatigue and pain, I'm going to scream a little bit about the negative messages fed to us on these groups. It is a message that is just as detrimental as the other message we get; push and succeed at any cost.
I sometimes forget that people understand and don't judge as harshly as I judge myself, so it's good to be reminded to throw off unnecessary pressure.
These invisible illnesses that cause us personal shame are widely understood by those who suffer from it and those with loving family who see the suffering and the toll it takes. People do understand but there is still stigma. There's still a sense of shame for saying, I'm too tired to work today but I still have to. There's as sense of shame in knowing your illness has gotten to the point where you're having psychotic symptoms. Yup, Fibro and Lupus can cause psychotic symptoms. There's embarrassment as we speak but forget nearly every other word we say. Can't think of the word for the life of us. Then there's the mania associated with these illnesses. There's embarrassment about the drop to the ground fatigue.
Insult to injury! On top of the illness there is humiliation and embarrassment. And yes, some will judge but please don't forget the ones who understand and offer support. Support may come from some of the most unexpected places.
Because the pressure is so great to succeed and perform, we sometimes slip under the veil of stigma, until someone reminds us we don't have to wear it. Once it's off we see a little clearer. We see just how much support we really have. No one can hand you a cure but they can offer you what you need most, a minute to gather yourself, time to rest, and encouragement to manage symptoms to the best of YOUR ability.
Though it feels like it sometimes, you are not alone. Some judge but many understand. Though it feels like it, you are not a freak. You do not need to isolate. You do not need to remain silent about your pain or crawl in a hole to shield and protect others. No, don't do that. Do what you can and you must, but remember you are not alone. You aren't.
My truth today is that I'm not an Olympian. I'm exhausted, but I still have work to do. It'll get done. I'll work slowly and steadily....without a veil.