There were and are a lot of things that I didn’t want from Ed that I had been living with nearly my entire life. I didn’t want to be told what I could do or couldn’t do from other people. I didn’t want to be told that I had to eat. I didn’t want to be looked at with pity. I didn’t want people to think I was stupid, vulnerable or that I just wanted attention. I still don’t want any of these things after being officially diagnosed and “out” about my Ed.
The reason I waited so long to talk about this on social media is because I was worried about what people would say to me. I was worried about what people would think of me. And I also didn’t want to be labeled, again, as a person who has multiple disabilities. Even though it is true. You see, there are many stereotypes to having Ed. I didn’t want to fall into those, even though I know I do fall into some of them. I didn’t want people's pity, I didn’t want their prayers, I didn’t want their thoughts, I didn’t want their opinions on what I should do, I didn’t want their snarky comments and I still don’t want any of those things.
What I need from someone who cares: I can’t have people talking about weight or eating in front of me, in a sense. Never talk about weight. It can be okay to talk about eating. Like, making plans to eat for example, would be fine. But don’t talk about calorie intake or amount of food. I know some people will not like that I am giving restrictions for them but I don’t care. This is what I need right now to help my restriction of food. Once those topics come up, Ed’s wheels start turning and that is what will make it harder for me to overcome Ed and actually eat something.
What you need to know: It is usually easier for me, personally, to eat in groups but only when there isn’t talking or discussing about my Ed or weight or calories or the amount of food there is in front of me. But if people are glaring at me and watching every bit that I put inside me, I will stop because I will feel humiliated and ashamed. So, please don’t do that. If you have questions or concerns about this, please just ask. I will be fine with that. Then I know you care.
However, I decided to write this now and tell people on my social media because the holiday season is coming up and that scares the hell out of me. A lot of my family members and friends know about Ed but I think they don’t understand how it has affected my entire life and how it has changed and affects me now. This is for them.
This is also for everyone else out there that is silenced by Ed. I needed to bring myself out of the fear and humiliation I thought I would get from putting anything on social media so I could start spreading awareness about Ed and debunking stereotypes. People need to understand that they can't just assume that they know what I am going through because of what they have seen on T.V. or in movies. Some of those aren’t even accurate. Some of them are. I just don’t trust a movie or T.V. series to talk about an important issue like Ed when someone, like a director, actor, producer, etc. hasn't lived with Ed.
However, the Netflix original “To the Bone” is a film that I do recommend you to watch. I related to it, somewhat. And many people that were involved in the making of that film have had experience with living with Ed. But you need to understand that that film is just one to a few personal narratives of what it is truly like to live with Ed.
I put this post out there so people ask questions. They can learn from my experience as I have. But my experience doesn’t count as everyone else's. My experience is mine and only mine. I can’t have people telling me what is good for me. I can’t have people telling me how much food I should eat. I can’t have people serving up my dish. I can’t have people looking at me differently. I know this may be very hard for you but I just can’t have this in my life. I am working with a therapist from The Emily Program. So, I don’t need anyone’s unsolicited advice when I have a professional's, that is actually helping me.
For the past six months, I have been writing about Ed and how it has been affecting me and changing over the past ten or so years. I have been discovering how and why I have Ed in the first place but I won’t release that information until my memoir comes out. Because there is no need to until then.
But I can say that ever since I was officially diagnosed, Ed did get about ten times worse. Being diagnosed triggered it and I had some really bad couple of months. Therapy has been helping, which, frankly, surprised me. This is all coming from a person that wasn’t just in denial but I cancelled my first two therapy sessions. The first time I went on the website to look more into the program and what they could do and where it was, the first time I was actually doing something proactive, I had a panic attack. Recovery for me is something that is still very scary. Being this irrational is something that is unsettling and fearful. But I am getting there, I am getting better.
More posts to come about this...
