So my wonderful husband was recently asked by a fabulous WBB member some questions about how he knows what I need and responds to what I need, and basically how he copes with my ED... I was so moved by his reply I wanted to post it on here also...
We don't understand. This is important: it is not possible for us to understand. The best we can do is come up with some metaphors and hints that lets us make good decisions.
As a simple exercise, try figuring out how you'd explain a colour to someone who can only see in black and white. You can't do it, they have no way of truly experiencing it. If someone else then came to them and said "so tell me about the colour red", they might say "Red is..violent! it's the color of blood! and roses, and so it's romantic, and also stop signs".
Similarly, I could tell you about ED. I could tell you that it makes you want to do things you don't want to do, I could tell you that being told you should "Just eat food" makes you react angrily, that a planned lunch with friends can result in anxiety for a week beforehand and that some foods like chocolate are still usually awesome in small doses.
I could tell you about clinical depression. I could tell you that it's like "feeling down", I could tell you that unlike "feeling down" it doesn't respond to things like hugging puppies or going for a run. I could tell you that clinical depression is long-term, appears to respond best to therapy in combination with medicine, and that the exact combination of medicine that works seems to be hard to figure out.
But for all this telling, I no more understand depression or ED than our poor fellow understands the colour red.
So for all the places where you understand how to act around someone with ED, Your husband and I need a reasonable metaphor or a set of hints, otherwise we don't know how we should act.
We cannot get that list from you. One of the first things we all learn about ED/Depression is that it causes self-harming behaviour. We cannot trust you to give us the hints that govern how we react to that behaviour, because it might lead to something harmful for you. We need to talk to someone else or figure out another way to get those hints.
I wish I had known this early on myself, I managed to get to see serra's counsellors a couple of times and came out frustrated - they seemed to constantly be asking me about my feelings and attempting to resolve whatever recent difficulty prompted trying to see them, but they weren't giving me tools to work with - I didn't come out understanding anything better. If I had known what to ask for - the hints - things might have been better.
In the end I got most of the hints from watching serra help other people with ED. The kind of thing she might try and get away with herself, she would never let someone she cared about get away with. By observing how she acted around them, what she tried to do and what she avoided, I learned how I should act.
At the same time, serra gained some insight into the kind of thing she was putting others through when she let things get too far. This helped her recognise and moderate her own behaviour (along with incredible efforts on her part working with her counsellors etc to give her the tools she needed).
In the end, this means we still can't communicate about ED or depression. I don't, and cannot understand it. I can sympathise with her the same way I can sympathise when she gets a migraine (something else I have never experienced), I can acknowledge her indicators about when she's feeling particularly vulnerable to ED feelings, but to talk about it usefully she talks to her counsellors or friends who have the necessary experience.
What we can do is live in a way that minimises the impact and helps her. In this I can play a major part. I create a peaceful environment at home with the minimum of stress, and when we go out I am her ambassador helping others behave in a way that avoids putting pressure on her. I understand (mostly) how to act in order to avoid engaging with the ED or embarrassing her. And finally, I act as the line of last defense - if she seems to be spiraling I can intervene with confidence.
I have learned I cannot "fix" the ED, there is nothing I can do that will actively help with it. I understand that the best thing I can do is create an environment where the work done by the people that can fix it has the maximum effect.