Eating disorders and me: the quest to take the edge off

Trigger warning: This post includes explicit descriptions of eating disorders

 

I’ve had eating disorders since I was a kid. They have changed a lot over the years and for a long time I thought I had left it behind me but it turned out I hadn’t. I deal with it better these days than I did for a long time but still, the other day the truth hit me so hard: It’s still there. I’ve been telling myself and other people that I used to have eating disorders but that I don’t have it anymore, but that’s not completely true.

My relationship to food is so weird that it’s too difficult to explain it here, but I tend to bounce between the urge to overeat or eat way too restricted. I resist these urges a lot, but I still have them. By now, with around 30 years of living with an eating disorder, I know a lot about how it works for me. No matter if my eating disorder is telling me to not eat at all/eat very restictedly or if it’s telling me to overeat, it’s acutally about the same thing: the reward that takes the edge off the constant overwhelming.

I’ve been in an ED treatment but it didn’t really help that much and I think the reason is that it never dealt with the fact that I’m autistic and it’s very connected. Because no matter what my ED has looked like, it has always had an element of trying to deal with being so overwhelmed all the time. There are just too much emotions, too much sensory input, too much hyperactivity, too many thoughts, too much pain and too much confusion and fatigue for me to deal with. My ED has been a way to prevent meltdowns or deal with them when thy have happened.

Because no matter if I starved, ate extremely pseudo-healthy (because it’s really not very health at all) or overate, binged, compensated (worked out very hard and long or threw up), it was all about trying to prevent being overwhelmed (some sort of starving) or deal with it when it had happened (overeating, binging, working out very hard, throwing up).

These urges have also always to some extent been about me feeling like I’m about to fall apart from the feelings I don’t understand, like the social confusion I’ve always experienced. The sense of reward that these behaviors have given me is something I rarely experience in other aspects of life, because even though I can get praise for things I do, I seem to fail so miserably at being a human. My way of being human is wrong, according to the world around me and unfortunately, I believe it.

This has obviously very much to do with me being autistic but it’s connected to something else as well, however, that’s too complicated to write about. I just tried but decided to not bring it up in this post because it’s too taxing and I don’t know how to explain it. Maybe in another post.

Advertisements

Ableism in Romantic Relationships

I was thinking about ableism in romantic relationships last night. About all the various forms it can take and how hard it is for me to detect it. When I look back at past relationships, I see many cases of ableism but while they were going on the thought never occurred me. As far as I knew I wasn’t even disabled, I was just a very bad person who couldn’t do everything that people expected of me. I tried so hard to not be the failed version of me that I somehow always ended up being in romantic relationships. I went to therapy, I read books, I listened and tried to learn but somehow certain problems kept coming back. My lack of energy was one of them. My need for quiet time on my own was another.

I had a long distance relationship for a while, and every time we met it got very intense due to the practical arrangements. She lived in a dorm and I lived in a small apartment and we spent almost every minute together. We both wanted to be physically close but I had a bigger need for space and this became a huge problem. My girlfriend at the time wanted to be physically close to the point where taking a shower by myself always ended up with a fight. My need for time when nobody touched me or talked to me was not a big thing to me but my girlfriend couldn’t understand why I needed this. I tried to explain but since I didn’t know that what I was experiencing on a daily basis was called being overwhelmed, I didn’t have any words for it. My efforts to tell her that it felt like all the sensations from our physical contact stayed in my skin, undigested until the point where I felt like I exploded if I didn’t have time on my own – I didn’t get through to her.

Sometimes I gave in and we showered together. Sometimes I let her sulk while I showered on my own, angry with her for not respecting my need for space but also ashamed and feeling guilty for needing this. The times I had a meltdown due to the lack of time on my own the shame and guilt was even worse, and somehow this always ended up with me reaching the conclusion that something was horribly wrong with me. We both agreed I needed therapy to be “fixed”.

It seems to be a recurring pattern in my romantic relationships: I can’t live up to other people’s expectations and it makes me feel guilty and ashamed and I think I’m a bad person for not being able to do certain things. The fact that I’m disabled and that’s why I can’t do those things somehow always hides behind my feelings of shame and guilt.

 

Update: There’s a follow-up to this post here, where I write about how an ableist society affects romantic relationships from the outside.

Having a baby without knowing I was autistic

Content Notion: Internalized ableism

 

I’ve written a lot about that I’m mourning not knowing I’m autistic earlier in my life. One of the times that really makes me sad to think about is when I had my child. By then, I had been in therapy a lot for my recurring depressions and emotional instability (which turned out wasn’t emotional instability) and I considered myself “fixed”. So did all professionals and I was so sure that the last problem – that I got so tired from being around other people – was going to be ”cured” when the baby came. This sounds unreasonable to me now, but at the time a psychologist had convinced me that my constant fatigue was just the normal everyday tiredness that everybody feels. I thought that I was somehow spoiled since I kept complaining about it and when the baby was born and I couldn’t focus on myself anymore, I would adjust and stop being spoiled, unsocial, and feeling so mentally overloaded and tired all the time.

So what happened? Well, having a baby did certainly not decrease the amount of quiet recovery time that I needed. In fact, having a baby made it obvious that not getting plenty of quiet time on my own was a disaster to my health. Having a baby made the differences between me and my partner very obvious.

Because, before our child was born I thought of mine and my partner’s need for quiet time alone as fairly similar. We both needed it and were fine with it. But when our baby was born and neither of us got very much of that recovery time, our responses were very different. My partner longed for time on their own, for sure, but was still feeling okay. Tired, of course, but that was about it. I felt exhausted but not tired and sleepy, like my partner. I couldn’t sleep. I cried. I panicked. I was so overwhlemed and had no words to describe what was happening and I felt like the worst parent – no, the worst mom – in the world. I didn’t feel like a real mom. I felt like a fake mom and a fake person since all the therapy obviously hadn’t fixed me.

I loved my baby so deeply. Before my baby was born I was well aware that feelings of love don’t neccesarily blossom by the baby’s first breath, but to my surprise I loved my baby very soon. But the love was painful. My baby was easily overwhelmed and probably had a tummy ache and cried a lot. My partner and I took turns carrying our baby wrapped close to our bodies in a carrying scarf to make the baby suffer less. It helped, and it was wonderful to be close to the baby, but it was overwhelming. My joints hurt like hell from all the carrying (I didn’t know about my hypermobility problems either, at the time) but that was not what made me cry. I cried, lost my ability to talk, to interpret sounds and visual information because I couldn’t digest all the sensations from having so much body contact. I had no clue what was happening, having my baby wrapped close to me felt wonderful – why was it so hard? Why did it make me cry and have meltdowns (even though I didn’t call it meltdowns at the time) all the time? I was confused, ashamed and thought of myself as a failure.

If I had known that I was autistic I could have been a bit kinder to myself. If I had acquired a language for my experiences of sensory overload I could have communicated it to my partner and avoided a lot of misunderstandings. What’s even more important: I could have taken better care of myself. If I had known I was autistic, I could have given myself the recovery time I needed without feeling guilty. Without telling myself I was a horrible mom, a defected person in dire need of being fixed. I could have treated myself with respect.

I feel like I lost my baby’s first year due to all the nasty things I said to myself. My baby was wonderful and it is, and will probably always be, painful to think about how horrible I treated myself during that year. This is why I find it so important to not deny people a chance to self-understanding. Because self-understanding is closely connected to self-respect and self-care.

I’m alone with my fear because I can’t risk getting advice I didn’t ask for

One of the difficult things about my life situation as a chronically ill, disabled parent to a disabled child is that when it gets extra hard, I can’t tell people around me. When I feel scared about what’s going to happen to us, when I feel like giving up, when my health is getting worse and my partner is looking more and more worn out, I can’t tell my friends or family. I can’t ask for support from the groups I sometimes ask for support on other issues either. I have one friend I can tell but when other people ask how I’m doing I can’t tell them.

Because they will most likely start to try to solve my problems and I will drown with despair from all their advice.

Right now I’m so scared. I’m still in some kind of mode where I’m having serious sensory issues. I’m overloaded from next to nothing and can’t spend very much time with anybody, not even my child. It has been this severe since the Christmas holiday when I spent three weeks hanging out almost all of the time with child and partner. On top of that my ME is getting worse because I’ve been too physically and mentally active, or not been able to hold myself back as much as I need.

If I tell people about the sensory overload and repeating meltdowns they will say that I should get some extra help with my kid and try to rest or something else that I already know. Or, they won’t at all understand that it’s a problem and belittle my experience. If I tell people that coordinating all healthcare visits for my child is more than I can deal with they will tell me that I should ask somebody to help me with it. If I tell people that I’m really worried about my child’s health they will say that we should see a doctor for it.

I wish I could just do that. But the thing is, all of the “solutions” people offer me if I share a tiny little piece of the fear I feel right now – I’ve already thought of them. Many of them I’ve even tried or I’ve realized after doing extensive research that it’s not possible. Many of the solutions people give me would actually just make things worse. Every time people give me advice I didn’t ask for I feel desperate and sad in a way where it’s like that ground I’m standing on is falling apart underneath my feet. Because it makes me aware of that I’m on my own. There is nobody to help me. And that insight just makes the blood in my veins freeze and the darkness even darker.

I don’t want advice and I don’t want people who don’t understand my situation at all to start interpreting me. To be honest, I’m too tired to talk. Too tired to explain and certainly even too tired to participate in any kind of interaction. Because participating in a conversation requires a lot more than just rambling here. (That’s why I haven’t replied to your comments, I’m sorry about that.)

So I distance myself from people.

Therefore, I’m alone with my fear and anger right now. In a way it’s chosen, but it makes me sad anyway.

Update January 2017: A post on the same topic can be found here.

I don’t even have the energy to relate to other people’s existence

Today is just too much. I’ve spent the weekend at home with the rest of my family also at home and I’m filled to the extent that I think I’ll explode soon. Filled with sounds, movements, pictures and the plain knowledge that they exist. Because, to me it’s actually energy consuming to be reminded of other people’s existence. It’s very hard to explain exactly why but it’s like I have to do some active processing just to deal with the fact that my kid and partner exist when I’m around them. There’s nothing automatic about it, I can’t relax and get recovery when they’re at home.

When I’ve tried to explain this to people they look at me like they just saw an alien and they sure have no clue what I’m talking about. I remember when my kid was around eight months old and had just started to say “hi” to people we met, even to strangers we passed in the street. Most people found it charming and responded and that was too much social interaction for me. Sometimes the person started talking to me, asking how old my baby was and other smalltalk questions and I had to fight really hard not to start crying. At some point when I was crying in the evening I tried to explain to my partner what was happening and with my desperate, sobbing voice I managed to articulate the phrase “I don’t even have the energy to relate to other people’s existence”. My partner was confused and I guess that was one of those moments where I realized that I am definitely sensitive in a way that my partner isn’t. I didn’t understand much more about it at the time though, it was just confusing and scary.

This morning my kid had slept poorly and he did obviously not have enough energy for preschool. We decided that he can stay at home and not go to preschool and I know it’s the right thing to do. It’s not okay to push him through an overwhelming day and push him into meltdowns tonight. However, I’m crying because I desperately need a couple of hours for recovery after the weekend, and I have a lot to take care of. I really feel like an awful person for wishing they weren’t at home. For not being able to interact with my child and leaving that to my partner. I’m ashamed like hell right now.

The thing is, I’m also exhausted for spending too much energy on trying to make certain healthcare facilities accessible for me and my child, and from all the work with making preschool more accessible. All those emails, phone calls (and sometimes meetings) that I need to spend my very precious energy on because of an ableistic society increases my need for recovery time.

I’m not asking for advice on how to get my alone time, there are a lot of facts I haven’t written about here so please, no advice on that. I just felt like writing about this experience, because I’m trying to understand it.