Sunday, December 12, 2010

Chronic conditions

In my email to a friend, I asked when do you stop trying to cure a chronic condition. This friend replied back that we both know that at best, I'll be able to manage my eating disorder like I do my allergies and hypothyroidism. That talking and sharing and admitting to myself that I'm tempted are my pills to control the symptoms. 

After almost 7 years of dealing with Ed, I think he's right. 

I searched the web for more info in chronic eating disorders, but there is very little information. I found one site that mentioned hat eating disorders in adults can be chronic and that treatment shouldn't focus on eliminating the illness. He site mentioned how in one case the knowledge that she didn't have to get rid of Ed completely helped to her be symptom free for two years. 

Why isn't there more information on this? Why haven't there been more studies? 

Most of the books and blogs I read talk about cures. They don't call it that, but essentially thats what they are. These authors tell you that recovery is possible, that you can live life completely and totally without Ed. To me, that's the same as a cure - being totally disease free.  

These authors tell us to never give up. To keep fighting Ed. That we can become recoverED, too!!

So what about those of us who have fought Ed for years with no sign of winning the war? We're older, more set in our ways, have more responsibilities - jobs, families, bills. We are highly functional, even when in the throes of the illness. We never have let our bodies become critically ill. Our diagnosis is often ED-NOS.   We have learned to survive in the real world, even though most of our conversations happen inside our heads. Ed has been a helpmate more than a destructive force. 

For years we struggle, feeling ashamed and guilty for not being able to beat Ed. And feel forgotten in all the talk about "recoverED." 

I don't want to be forgotten anymore. I don't want to feel like a failure anymore. 

I am not giving in to Ed. I still will fight like I always have to try to find other ways to cope. I will still take my medicine. But my end goal has to change.

Just because I haven't been able to live completely without Ed and may never be able to, doesn't make me a failure.
It makes me a survivor. 

Is anyone else an adult who has been fighting and/or living Ed for years? What are your thoughts? Do you think it would be easier (you would feel better) if the focus of your treatment was on living with Ed rather than getting rid of him? Do you think that would help you manage the illness better (less slips and relapses)?


HopefullyGrowing said...

I think I love you. I don't have a family of my own, but I do kinda fit this category and I am sick of people telling me someday I'll be all better. . . thirteen years into this and I think I'm happy with just living my life but still knowing that just like diabetes, cancer, anything else, I'm not looking for a cure. I'm doing my best to be happy, keep going, manage the depression and ask for help when I need it.

I don't want to be recoverED. I don't care if I live the rest of my life not being able to get rid of my scale. Or keeping a general count in my mind of what I have eaten and what else I need to eat. Or keeping a MP for the rest of my life. I don't want to say my goal is to figure out how to live with the eating disorder, because I know that isn't possible. Perhaps it is good enough to say I want to figure out how to live above the eating disorder.

Tiptoe said...

This is a hard question, because everyone's definition of recovery is different. For some, it is about being entirely symptom-free, for others it is something different.

I think the thing that is hard with the term "chronic" is there is a sense of loss of feeling hopeless with it, that somehow you are just a lost cause, that having this dysfunctionality is "okay" in a way.

When you're high-functioning ED, it makes it much harder to see there is a problem at all, but the ED is still taking something away from you whether small or large. You have to ask yourself if you are all right with that or not.

For me, the Ed was with me for 12 years (2 years ago, I put a much more concerted effort into recovery). I'm certainly not recovered by any means, still have body image issues, worry about food, though less than before, still have anxiety over small things, etc., but the difference is there is just a lot more awareness on my part than ever before, so it comes down to a choice at this point. Will I ever be completely symptom-free, never worried about my body, food, etc., I don't know, but I do strive to achieve something more than the ED ever had to offer.

Sorry that was a long-winded post.

Kat said...

Oh I just posted a similar sentiment on my LJ! I dont think there's a cure for ED's either. Personally, I've had periods of decreased symptoms and weight restoration but since I slip back so easilly into the ED and I've never felt 100% free I won't call them periods of recovery. I do believe in remission though and I'm hoping for a lifelong remission, but I accept even when I do get better I'll always be prone to relapse. I like what HopefullyGrowing says - "perhaps it's good enough to say I want to figure out how to live above the disorder". I think so much of EDs have a basis in personality. These things (parts of ourselves) can't be 'cured' as such so we need to find better strategies for living with them. Great blog by the way, very best wishes, Kat.

Anonymous said...

You know, I thought I was somewhat recovered. After bingeing huge amounts twice a day and abusing laxatives in my late teens/early 20s and fitting the bulimia diagnosis, I was able to stop the symptoms that were giving me electrolyte imbalances in my mid 20s. But the body image stuff was there and lack of self esteem--but that's there in a lot of non-diagnosed/diagnosable young women. I became a garden variety stress overeater. That's not an ED.

The problem is my weight went up a few pounds a year. Then I started having health issues--I wasn't obese, but it did create problems. So I started to monitor what I ate and I lost 3 dress sizes. My blood sugars and blood pressure became normal. I walked regularly--great and healthy, right?

It brought back ED thoughts. I was eating disciplinedly for the most part, even allowing foods like chocolate in moderation, etc. and all was well--but then I'd overeat and I'd take some laxatives because I freaked out. Not enough to have a bulimia diagnosis--first the binges were a few hundred, not a few thousand, calories--and I thought if you take a "normal" dose of laxatives once a month to purge as opposed to a box a day, that's not too bad is it?

Then I had major stress--and I was bingeing daily--and purging a couple times a week. Now it's already abating somewhat in terms of behavior intensity--but I realize I will always have to be vigilant about the TENDENCY toward ED behaviors--and that my thoughts are still there. The only time I was free of ED thoughts, I was overweight and otherwise unhealthy and I think the reason was that I wasn't bingeing but I was stress eating away my emotions.

So I identified with what you said. It's not ideal to live with stuff like this but it's better than extreme ED hell--and shy of complete recovery. What can you live with? What can I? We're all different.