I have had an eating disorder for longer than I have not had an eating disorder. It shocks me how little people still know and understand about them. When new studies come out about eating disorders, they have never discovered anything that I haven’t already known for years. I don’t know what they are studying in order to get information, I do know it would go a lot faster if they just asked people with the life experience. A doctorate and years behind books will never be a substitute for living it, that goes for any illness.
I started my road to recovery in 2015. For me, that meant 9 months of residential treatment. The bathrooms and kitchen were locked, meal times were heavily scheduled and we were never alone. The amount of water and napkins we had at the table were monitored, and our plates were checked in and out before and after the meals we cooked for ourselves. We spent a lot of time in group therapy, DBT, therapy, trauma therapy, equine therapy, adventure therapy, if you could add therapy to the end of it we did it. It was not a hospital setting, it was really beautiful. We were allowed outside as long as we could be seen, within curfews, and not trying to exercise. It may seem really extravagant that we were able to spend time with horses, do experimental therapy like jump off poles or even have access to practices that are being widely used now for free (hello ketamine and TMS). Maybe it was, I know I was extremely lucky that I was there. I also know that we mostly were not having fun.
I tried to leave treatment many times. I think every few weeks many times. I would decide that I wasn’t as bad as everyone else, I didn’t need to be there, I was better; any lie you tell yourself to get out of something just insert it and I tried it. I really believed it. I did not think I needed to be there. I understand now that this was my disease trying to take command of things. It did not want me to let go of it so it tried to convince me that I should leave many times over. Even when I was being told I might be moved to a higher level of care so I could be monitored more heavily and get feeding tubes, my eating disorder told me I should leave.
One of the things that is said about eating disorders is that you will have it forever. This doesn’t mean I’m going to have a bad relationship with food forever. This means that for the rest of my life, I am going to think about food differently than other people. I am going to make my choices a little more directly. When I heard about a new fad diet the hair on my arms will still raise up a little. This also means that I have to work harder to repair somethings. My nails are more brittle so I have to work on fixing that. I experience way more GI issues, and no, a gluten-free/plant-based diet is not going to fix that, thank you very much, Fuckers. I do mean that term, Fuckers, in the most literal sense for those of you who got offended. In case it hasn’t been clear yet, an eating disorder can be lethal and cutting out entire food groups short circuits an eating disorder brain in such a way that recovery is near impossible. What do I know, though, ask the doctorate student. My skin dries out more easily and my hair is a nightmare.
When you spend years not getting the right balance of nutrition your hair can start to fall out, mine did. The body dysmorphia that comes along with an eating disorder means I have spent year dying my hair. Something in me, like trying to shed fat, if I can shed this hair color, I will feel better. The combination of hair dye and poor nutrition has damaged my hair immensely. Something that is always pointed out whenever I have gone to a hair salon. I understand it is the hair stylists job. It limits the amount I ever walk into a hair salon though. It has been a few years since I have gotten my hair cut at a salon and this is pretty normal for me because I am so often met with comments about the condition of my hair. I also have PTSD and am very uncomfortable with people close to my head. I don’t understand the people who tell their hairstylists all their secrets. I don’t even understand the people who can talk to their stylists. I can’t, I am too uncomfortable to talk. I am also sweating so much that vegetables could be steamed underneath the cape while they are cutting my hair. Maybe there is a hair stylist out there for me, I just have not found them yet.
I could write the rest of my life about my eating disorder and still, I am not sure it would cover the whole story. I understand that for me, underneath my need for control was a lot of anger. Until I realized what the eating disorder was doing for me, I couldn’t even begin to try and replace it. Every single person has an individual story. I don’t try and represent or speak for the entire recovery community. I hope, in some small way, whatever anger is left in me, is used as fuel to help create an environment where food is no longer a replacement for love.