My Illness Demystified Part 1/?
If you are reading this, it means that I have finally gathered the courage to hit “post” and start sharing with you what has been one of the weirdest and hardest struggles of my life.
I was inspired to write this the other day when someone told me that I didn’t belong in a certain segment of the spoonie community. It was a little surprising to me because this was the last group I thought would reject me and people with my illness. As of now, I have officially been cast out by members who claim to represent all areas of society. It’s not about fitting in or belonging anywhere, but I realized it is about awareness. So, I think it is time that I come out publicly and talk about and start advocating for my disorder.
There is so much confusion and misunderstanding regarding my illness and it is extremely hard to come forward and talk openly about it. I mean, it still is unbelievable to me. I’ve been dealing with symptoms for over 9 years, and I still think that I may wake up tomorrow and find this has all just been some bad dream. “How could something like this happen to me?” Often runs through my head. So, these posts aren’t going to be easy for me.
I don’t owe anyone an explanation for my illness and I shouldn’t have to give one to be accepted and I can guarantee that coming forward with my illness will lose me friends and followers. I’ve been completely abandoned in real life except for a few. And the rumors have been nasty. The things said to my face, worse. I have been called “tard,” “cripple,” “crazy,” and, perhaps the hardest of all, “liar.”
So, I am going to make a post that talks about my illness. I am going to come out as an advocate for it. Awareness = funding = research = help. And I am posting a preliminary announcement because I want to make sure this is accurate and that the emotions I feel don’t come spilling into the announcement. There are 20million suspected cases of this illness. So, I am not alone, but I often feel like it. If this story resonates with you, there is a chance we are talking about the same thing and I’d like your help with resources and experiences. If you are a spoonie and care about our representation, I encourage you to reach out to me and help me proofread and edit this draft. We should be working together, not competing with each other. (I am guessing it will take me some time to get the second part out)
Awareness = funding = research = help and I think it’s time that I realize that I am step 1.