First encounter with anorexia

I was first truly introduced to mental illness as a whole when I was a sophomore in high school. I took a basic psychology course that included probably two weeks about psychopathology. I found all of it incredibly fascinating. While going over generalized anxiety and depression, I wondered if I might struggle with them too (but that part is a story for another day). We had an assignment alone or in pairs to explain the diagnoses we studied to the class in some sort of presentation. I didn’t know it at the time, but one of these still is significant looking back.

Two of my classmates pulled up their PowerPoint. In big letters were the words “anorexia nervosa.” I think I had probably heard of eating disorders at that point, but I knew nothing about them. I intently listened in. I don’t recall many of the details now, but one part has stuck with me. There was an animation with a girl looking at her body in the mirror as larger, then zooming out to find she was actually emaciated. I was somewhat shocked by this. I also understood feeling that way about your reflection.

I was born with pectus excavatum, a deformity of the chest wall where the sternum is sunken in. I began to feel self-conscious about it when I was just around 5 years old. It was the first time I ever hated my body. I had surgery to correct it in 8th grade, but it both semi-helped and hurt me. I gained weight very quickly due to less stress on my heart/body post-surgery. My disgust with my body shifted to the weight I had gained. It felt pretty terrible to be forced to buy new clothes when I was the same size for so long.

All of these feelings and the whole PE experience meant I felt connected to the girl in the video. My thoughts weren’t entirely distorted at that point, though. I would consider them pre-ED thought patterns. I disliked my body. That was the case for over half my life and my “normal,” so it didn’t concern me. I wanted to lose the weight I had gained and go back to the comfort of my old number. I probably spent a little more time staring at my reflection than I should have. In my mind, nothing about this was unhealthy or wrong. Most girls I knew would say things negatively about their appearances sometimes. It was completely the norm.

Even as I compared my struggles to someone with anorexia, I never imagined that would be my life in less than a year after seeing the presentation. Sometimes I wonder what it would have been like if I instead took the class junior year. Would I have recognized the red flags then? I actually did take AP psychology which contained a mental illness unit, but that didn’t give me the same shock/connection to anorexia like before. We glazed over the diagnoses. This only increased the belief that I was fine and an eating disorder definitely can’t be something I struggle with.

If I could go back and talk to 15 year old me, I would tell her to pay attention to mental health and well-being, look for help if she needed it, remember what symptoms can show that it’s not all okay, and share about her body image even if it doesn’t seem as severe as the girl in the video. I would give her a hug and tell her she was loved through the silent struggle. I know that none of this could have prevented me from slipping into anorexia, but I think even the awareness would have changed how long I went without treatment. It’s also a little surreal to realize that around 6 years ago I knew pretty much nothing about eating disorders when it’s now taken over much of my life.

Top 30 Anorexia blog

I opened my blog email yesterday to something that’s pretty amazing/unexpected/humbling: my blog has been chosen as one of the top 30 anorexia blogs by Feedspot.

I’m still in a little bit of shock. When I set out to blog three and a half years ago, I never imagined it would grow to where I am today. I’m not one to be concerned with numbers in terms of popularity, but knowing that this blog has reached (and hopefully helped) more people than I ever imagined is pretty great. I’m so thankful for each person who has read, commented on, and liked my posts. I love interacting with others and hearing what you think.

I’m so excited to see where this blog will be in another six months, year, two years, etc. I hope to continue regular posting for a long time to come. I truly have found an incredible amount of joy on my little piece of the web.

If you would like to read the other blogs on this list (which I definitely recommend!), the link is here. I also have posted the badge with link on my sidebar.

Climb on?

I went into my appointment with Dr. C yesterday with just one objective: get approval to start rock climbing.

I was first introduced to climbing last fall via my roommate. We are blessed with a huge rock wall and bouldering area here at Calvin. Around one night a week, all year long, I went climbing. I grew stronger and fell more in love with it. The huge sense of strength and power continued to bring me back. I was able to challenge myself with the continually changing routes. It certainly isn’t easy, especially with Ehlers-Danlos, but I made it work. The minor (and one majorish) injuries were worth it.

Unfortunately, I didn’t get to the wall much this last semester. My eating disorder played a huge part in this. When I wasn’t isolating, I usually felt too weak to climb. I still pushed myself when I probably shouldn’t have. This leached some of the fun away from an activity I enjoyed so much.

I’m not in a perfect or great place now, but I am more than mentally ready to tackle climbing again. I crave another way that I can appreciate my body and have fun with friends. I was relatively optimistic heading into my appointment. Honestly, I shouldn’t have been, not at all. I am better than the end of less fall. I am off medical leave. I am handling the semester thus far. I am not, however, at a healthy enough place to take on such a physically demanding task.

I grew the courage to ask for Dr. C’s approval towards the end of my appointment, to which she answered, “Absolutely not,” in a solemn tone. I immediately questioned why and hoped for a compromise. Her concern is my heart. I am not allowed to belay (hold the hope taught as your partner climbs) because she is afraid I will pass out and put someone else’s life on the line. While not ideal, I could technically still climb but need to have one other person belay my partner. That idea lasted for about two seconds before she gave her reasons why I cannot climb. One is that I would pass out at some point during my climb. Assuming I had an experienced and focused belayer, I would be okay. More serious than this, she believes there is a chance that I could collapse or even have a heart attack. If that were the case there isn’t any guarantee someone would be able to help  or even resuscitate me in time to prevent serious damage. Minor issues with climbing include broken bones (due to possible osteoporosis/penia with my ED), dislocations/subluxations (thanks EDS), and in general injuries related to the way I am inadequately nourishing my body.

I’ll admit, I do understand some of her worries. It isn’t a great idea for me to try this without following my meal plan. If I was restricting that much I probably would be too weak to even hoist myself up the wall. It’s happened before. I don’t agree with most of the heart stuff. I frequently get dizzy and sometimes feel like I’ll pass out. This mainly occurs if I’m going from sitting or lying to standing too fast, or when I am not hydrated. I could easily be careful enough to prevent this. There is no way my heart is “bad” enough to cause me to collapse or worse. I have no special restrictions otherwise for the abnormality. Mainly I just need to ensure I hydrate and feed my body. Easier said than done, but something I would work on the days I climb.

Part of the reason she is so worried about my heart is because she believes I may have Marfan Syndrome. I am missing nearly all of the markers minus my PE, hypermobility, and vision (eg: not tall, no long and skinny limbs/feet/fingers/etc, no mitral valve prolapse or aortic root dilation, none of the facial features, lack of family history). If I did have it there would be an increased risk for multiple heart conditions much more severe than what I am dealing with currently. I still need to wait until I see my pediatric surgeon in a few weeks (more on that soon), but I can almost guarantee he will rule it out. Once that happens I may be able to negotiate with Dr. C again. Side note: I’m looking forward to picking his brain on EDS and hopefully, maybe getting referred to someone who actually gets it.

As much as I disagree and discount her concerns, I will listen and resist rock climbing for now. The tone she used scared me. We have spent two months now talking about my heart and how imperative it is that I start nourishing my body to prevent damage in the future. I can’t easily forget or play my symptoms off as absolutely nothing no matter how hard I try. It isn’t normal for your heart rate to increase 30 bpm when standing and as much or more practicing gentle yoga. I shouldn’t, at 21, be plagued with symptoms, an abnormal echo, and worry. And yet, here I am.

This conversation we had is about far more than just rock climbing. Her goal isn’t for me to increase my food intake so I can have her blessing to get back on the wall. This is about taking care of myself. If for nothing else, I need to repair any of the damage I’ve caused before it gets any worse.

I didn’t get the answer I had hoped for. I don’t agree with some of Dr. C’s reasoning. I am still resistant, making excuses, and defying her (and everyone else’s) requests. I have started to realize the bigger picture here. That’s a step in the right direction, one I don’t want to take, but a step nevertheless. One conversation at a time, I am getting there, even if it means getting motivated about renewing my rock wall privileges.

 

When treatment (and ED) multiplied

Two months ago, I only had therapy every other week.

Just over one month ago, I saw a dietitian weekly and therapy biweekly.

One month ago, I added a doctor to the mix. Around that same time, I switched therapists and began attending one group per week.

Two weeks ago, I attended a couple more groups.

Last week, I had activity therapy, R’s group with snack, art therapy, nutrition and yoga, and another therapy group with R over Monday and Tuesday.

This week, I was placed on medical leave, attended my first two days of IOP, and had to switch dietitians without any prior knowledge or choice.


It has been an absolute whirlwind. I remember thinking at so many points that I didn’t need this next step, I wasn’t sick enough. I argued, deflected, begged, hid the truth, ignored, and did everything to fight hard against any extra treatment.

I can’t fight this anymore. In fact, if I do fight it will end with me being forced to leave school and in residential or inpatient. This is serious. If I continue to follow my eating disorder it’s going to do a lot more than send me to a higher level of care.

Where I’m at now is a crossroad. I know what will happen if I continue with the eating disorder. It’s safe and familiar and easier. I’ll have the control I crave, watch my body shrink down to an “acceptable” size, and be able to cope with everything in a my life (albeit in a rather unhealthy way). On the other hand, recovery is the unknown. I’ve had some glimpses, but going full in is scary. It could mean a full life where I can become the best me: a nurse, wife, friend, mother, and person, all without Ed. The question now is this: do I stay in the familiarity of my eating disorder and fight all forms of treatment or trust in recovery by fighting my eating disorder? I think I need to at least try option #2, because I can always go back to the ED (as I have now) while recovery will only become less attainable as time goes on.

Oh, my heart.

I had expectations going into my appointment with Dr. C last Friday. She would go over the DEXA scan and tell me it was normal. The echo would also be normal. She too anticipated those results and had no worries that it would be different. It was.

“Your bone density turned out within normal. I would like to see it a bit higher, but we’ll keep an eye on it. I wasn’t expecting any abnormalities with your heart.. but I was wrong.”

Cue shock, disbelief, and finally numb/lots of fear. She certainly isn’t a BSer, so I actually had to trust her word.

I’m not going to get into exactly what the echo found, but I’ll give her analogy. If you picture my heart muscle as a trampoline, a larger person will produce a larger bounce with more force for the trampoline to return to shape. If you take a smaller person, it only is pushed in a little and doesn’t require as much effort to get back to shape. My heart is looking like the second instance. It isn’t being forced to give a strong response. Over time, this would weaken and then calcify my heart. *this is very paraphrased

This abnormality is something that just isn’t seen in a young person. She fully believes that my malnutrition is the cause. The starved heart isn’t a healthy one. Adding dehydration to the mix doesn’t bode well either.

For now, this doesn’t have to be permanent. I can work hard in my recovery to nourish my body. If I continue down this road and the heart begins to calcify it will never get back to normal. Currently, I am using hydration to help. Restriction is back full force and it can be hard to get water down too. If I want to give myself the best chance of reversal I will need to eat. That’s pretty terrifying.

I began bawling before I even got out of the building. This can’t be true. I am still so much larger than I had been in other periods of my eating disorder. How could I have done this to myself? While the real Emily has these concerns, Ed’s view is the opposite. He says it isn’t that bad and I don’t truly need to eat or listen to her. My heart is going to be just fine. On the other hand, this also proves that I am sick and doing well in anorexia. (side note that I found interesting: this reminds me of how the serpent tested Eve in the garden way back in genesis)

This whole situation is a mixture of thoughts and emotions. Almost a week later I still can’t decide what to believe or think or feel. I’ve gone through shock, denial, sadness, etc, but not acceptance. Honestly, I probably need to see Dr. C again before any of this will really sink in. For now, I pray that I won’t randomly pass out or anything (as Dr. C warned there is a small chance it could happen) and eat/drink enough..

 

Restriction is…

Unlike my previous Anorexia Is post almost two years ago, this is not planned or edited. This is raw. I am in the pit of restriction and this is going to be an honest picture of what that’s like.

Your therapist, dietitian, and doctor not being able to hide their concern. So much brain fog. Exhaustion that sleep cannot touch. Wasting perfectly good food your mom sent you. Eating the absolute bare minimum. Putting off supplements.Being terrufued if Lies, so many lies all day long. Having to write down an entire notecard of what happened on session because you lose it all within an hour otherwise. Seeing someone lifeless looking back at you in the mirror. Hours of time going by with little memory of what happened. Feeling too weak to even do gentle yoga. Apathy. Watching your grades slip fast. Hating being at home on the weekends because it means eating more/food police. Hiding the truth from everyone. When it hurts to smile or be around others. Ed thoughts every waking moment. Exhilarating, when it comes to the eating disorder. Ignoring your hunger until it isn’t even there, only emptiness. Forgetting to message your mom all day. Putting everything else last. Shutting out everyone. Hiding. Ignoring any signs that you’ve gone too far. Anxiety dominating everything. Freezing no matter how many blankets you have. Sticking to the smallest list of safe foods. Defining your worth by the amount of food you ate that day. Goals shrinking by the day. Denying yourself every food you enjoy. A false sense of strength. Napping for hours on end.Not just about losing weight.  Zoning off constantly. Being at constant war with yourself. Needing to justify every bite of food. When ED behaviors happen on their own. A dying body. Losing the girl underneath this disorder. Not believing those in your treatment team.  Completely miserable.

Alice all over again.

Well it feels like I have just woke up
In a world where down is up
And up is a long way from here
In the big wheels where they keep on turning
They don’t slow down they just keep on learning

Well my name’s not Alice but I know how she felt
When her world started turning into something else

Alice by Lisa Mitchell has been one of my all-time favorite songs since the summer of FV round one (so 3 years). It describes how I’ve felt during many transitions, both good and bad. You can read my post from last fall here.

Once again, I am listening to this song at least 5 times a day (10 times writing this post, oops). I have quickly managed to fall back into the pit that is anorexia. It’s so startling. Sometimes I do feel like I woke up and poof full-blown Ed thoughts and behaviors. This isn’t exactly true, but it’s why I relate so much to the lines “well it feels like I have just woke up in a world where down is up and up is a long way from here.”

A multitude of changes have occurred in a relatively short amount of time. I went from doing nearly 100% of my meal plan in the summer to 1/2 of the reduced meal plan. I’m not always having 3 meals per day. Honestly, I know this is a bad sign. My mind is occupied by disordered thinking all of the time. I lie about anything and everything, mainly as a way to keep my parents out of the loop. Slowly, I lose control of my life by handing it over to my eating disorder.

Down the rabbit hole I go once again… but this time, it’s tempting. I know what I’m getting myself into since I’ve been here before. I have dealt with my problems through restriction, exercise, self-hatred, body checking, etc for years. In that way, embracing Ed thoughts feels much more comfortable. In a disordered way I feel at home. Anorexia is home. How messed up is that?

No matter how stuck I feel, I am not a permanent resident, or at least I don’t have to become one. I do have the power to turn around and climb back out. The Ed thoughts are strong, very strong; however, there is the healthy me still there. She is reaching out, seeking more treatment, and fighting every single day.

I am not alone. My treatment team, although all are new, will be here to bring me up. I have the option for more intensive options if I feel unable to handle this on my own. The few amazing supports I have will always be there. I am not alone even though it seems that way.

I have to decide: is it worse/scarier seeing how I’ve slipped into relapse, or is this false comfort and hope anorexia gives me enough to continue this downward spiral?

 

Right now I feel like Alice and I don’t have to accept this new reality when I am able to turn it around and come out of this stronger.