This morning is a rough one and I’m feeling very down. My body is in wicked shape today, and my resolve to tell my story is not what it was. I’m supposed to be healing and I’m sort of getting my ass kicked all over the place.
I’m just a person who has been sick pretty much my whole life and after having found a diagnosis, decided to share what I was told. I thought it might help. I was thinking specifically of the women who are more like me than not like me. I was thinking that if they were feeling, as I was, that my life was ending, I would be wrong not to give them the information I had and let them decide whether it made sense for their situation.
Since that time I’ve received many hundreds of emails, comments and messages. Almost all have been kind, and when I read the stories people are sharing with me, my heart breaks. So many are suffering and feeling so discouraged.
But, there are definitely haters who have set their sites on me and want me to know what a piece of shit I am. You have no idea how bad it can be. This morning, unfortunately, I read a message from a woman who swore at me and called me names and was just as cruel as she could be. How dare I make myself some kind of fucking expert just to get 15 minutes of fame?
I sat here staring at her vitriol and I asked myself why in the hell I would open myself up like this knowing that people like this are in the world and they are happy to use me as a punching bag.
Why are people so angry at me? Is it because I wouldn’t accept the diagnosis of Fibromyalgia as right for me? Why is that so upsetting? I’ve said repeatedly that if the diagnosis of Fibro makes sense for you, I have nothing bad to say. I wish you health above all else and if you are correctly diagnosed with Fibromyalgia and are being helped by your docs and your treatment, then who am I to pass any judgement? I would never presume to tell you that what you know about yourself isn’t true.
No matter WHAT NAME you give the illness from which so many of us suffer, it is real. We’re not crazy. We are suffering in great numbers and the truth is we are largely being dismissed.
And, then there are the people who are angry at me because I posted information about Dr. Shoemaker and his, shall we say, troubling past. They are facts, not stories. As I wrote in my post about him, he may very well have been a pioneer in the field of mold and the way it affects our health. That doesn’t mean we can responsibly ignore information about him that potential new patients should have in order to make a decision that’s right for their situation.
So, yeah. Lots of people hate me this morning and want me to go straight to hell.
When the post went viral, a sweet person contacted me and warned me that the more I spoke about these things, the more I would be attacked. They encouraged me by pointing me to Brene Brown and Why Your Critics Aren’t the Ones Who Count.
So, yeah. I’m sad. I’m hurt. I’m tired. I’m a little scared. But, for not at least, I’m going to keep going. I’m going to keep talking about what is happening to me and hope that the number of people who are helped in any small way outweigh the number of people who think I’m a terrible person.
I guess we’ll see how long I can keep it up.