What about siblings?

During a presentation last Friday at the New York Comprehensive Care Center Conference an audience member asked, “How are siblings affected? How was your daughter affected by her younger sister’s eating disorder and death?”  I answered the question by telling the story of how Jocelyn had devised a way to save Andrea from bulimia.  She seriously suggested one day, “We handcuff you to me for the next three months!”  I recalled how Andrea had laughed at this suggestion and asked, “How does your husband feel about the idea?” 

I went on to speak of one of the major lessons Jocelyn had gleaned from her sister’s death:  to never put off a kind deed.  I shared how Jocelyn used to send her sister small gifts throughout the year, recalling her own days as a struggling college student.  She had intended to put in the mail a small vial of sparkly fingernail polish and some tic-tacs wrapped with five dollar bills.  She never got around to mailing these to Andrea.  They sit on Jocelyn’s dresser as a stark reminder of the need to show our love for others today as we are not promised tomorrow.

I knew as I finished my stories that I had not answered the attendee’s question.  I meant to ask for someone in the audience to respond with their own experiences but the next question was asked and the moment passed.  Later I pondered how I would’ve responded had I been more prepared.

Our situation was unique.  Both our daughters did not live in the home when Andrea developed bulimia.  Andrea was in college and Jocelyn was a married 25-year-old.  Yes, Jocelyn was affected by her sister’s illness but not in the same way that a younger live-at-home sibling might be affected.  It would seem that this situation might cause a tremendous amount of envy, anger and/or “hatred” because of the continual attention given to the ill child by the parent(s).  There may also be some guilt for these feelings or self-blame if a sibling did not fully comprehend the etiology of the illness.  Just as Jocelyn wanted to rescue Andrea, I would imagine that may be an experience of younger or older siblings while simultaneously experiencing frustration when efforts failed.

The above paragraph is my “best guess” given what I’ve heard from siblings over the years, but I would imagine there are many more ways a sibling might be affected. If you are a sibling of someone who suffers with an eating disorder, please let us know the effect it has had on you.  We would really like to hear about your experience. When we understand the effects we may be better able to discover ways to mitigate them. 

Blessings until next time,

Doris   

Comments

[Doris Smeltzer]

Reply to "Me" post on August 1, 2011 (I usually reply to individual writers via email but my email attempts were returned "undeliverable," hence this public response):

My heart goes out to your situation...how very frustrating for you. You asked, "What should I try?" I wonder if you've tried a very direct one-on-one, face-to-face approach, saying something like,

"It seems to me that you are in denial about your eating, which is completely understandable as I'm not sure how much your body is able to communicate to you and so you are not able to see what I see. I would imagine that this exacerbates the denial which is what frightens me most. Because your body may no longer be able to communicate warnings about how starved your heart may be I fear that you will die from this. If that were to happen, how do you imagine I would be affected?"

It sounds like there is no one in your sister's life, not her boyfriend and not her colleagues, who provide a "measure of wellness" against which she can compare herself. Lacking that, the denial has been allowed to deepen greatly. By being direct (with kindness and without judgement) you will be providing a more focused "mirror." Yet, it is still your sister's choice on how she responds to the mirror: she can look the other way and ignore it's warnings, she could smash it to bits with what appears to be anger and hate or miraculously look a bit closer and see some of what you see and recognize that she needs help.

If miraculously she chooses the latter I'd want to be sure to have resources with me to offer: a treatment center nearby, the name & number of a therapist, dietitian and or MD who specialize in EDs and offer to go with her to her first appointment (resources for finding treatment are copied below) If she responds in one of the other two ways please do not take it personally: hurtful words and/or actions originate from the eating disorder NOT your sister. It often wants to "annihilate" anyone who threatens its existence and that is what you'll be doing, so breathe deeply and radiate as much unconditional love as you can muster (if it helps, visualize a tiny child throwing a tantrum...it is often easier for us to hold a small child in the light of love than a 40-something sister)

If she were my sister, at the very least I'd want her vitals (especially blood pressure in both a lying and standing position) checked to see how starved her heart actually is. If her denial is as deep as I think it may be, then I would be sure to have the death conversation: has she left instructions on how she'd like her body handled, is her will up-to-date, does her boyfriend know where these documents are located. This may sound harsh but it is the reality: starvation kills. And decades of starvation cuts years off one's life expectancy. That's the truth.

Sending thoughts of support and many prayers your way,

Doris

RESOURCES:

National ED Assn for helpline and referrals: http://www.nationaleatingdisorders.org/information-resources/index.php

Gurze Books, How to find an ED Therapist: http://www.bulimia.com/client/client_pages/therapist_directory.cfm

ED Referral for additional links to finding help: http://www.edreferral.com/Referral%20Request.htm

Multi-Service Eating Disorder Association (MEDA): http://www.medainc.org/help/

[me]

I wish there were more that I could do for my sister. I'm 50, she's 43, and her anorexia has gone on for decades. She's an athlete and has gotten orthorexic on top of that: Female Athlete Triad, etc. In her line of work people tend to obsess about being thin, which doesn't help. She lives hours from me, alone, and just seems to keep getting worse. She doesn't want to discuss her illness, and may not even see it that way. Her boyfriend (weird term) has only commented on her starvation habit once in the six years I've known him: "She never eats anything." What should I try?

[Catherine]

Two years ago my younger sister was diagnosed with bulimia. At the time I was in my second year at university, but I came home frequently. I had noticed she had some weird eating behaviour years before and mentioned it to my mum, but no-one really realised how bad it was. When she was diagnosed she also had a big problem with self harm and alcohol and so my parents were, obviously, very worried for her safety.
I found my mum's reaction really hard to deal with - it seemed all consuming. My mum stayed up late into the night to keep my sister company or keep an eye on her, meals were tense as my parents were obsessed with getting my sister to keep some healthy food down and this caused arguments. Also, the only thing my mum seemed to want to talk to me about is my sister - how it could have happened, how she was doing.
I was obviously worried about my sister too and felt awful for my parents who were always loving and caring. However, having my whole family home change and become so tense was really difficult. Shortly after my sister was diagnosed I went through a break up with a boyfriend who turned out to be really nasty, and in turn caused me to lose most of my friends at university. I became really depressed and anxious because I felt I had nowhere nice to go to and my parents had no time to talk to me. I've lived back at home for a year now and my sister is getting much better. Of course I'm pleased but somehow I can't help feeling a bit angry at her and my mum because I've never felt lonelier or depressed.
I know this sounds a bit selfish. I guess my point is that I wish my family hadn't changed everything because my sister was ill and had kept some sense of normality going. I understand that this would have probably been hard for them though.

[hannah]

I am younger than my sister who has anorexia and bulimia. We are only two years apart (14 and 16) and we used to be best friends... we are not as close now. When my sister was thirteen she was raped. She didn't tell anyone about the night she was attacked until I was thirteen. She was worried I might have the same fate. Anyways, she told our youth group leader at the church, but he told my parents and my sister lost all trust in just about everyone. She ran away and tried to commit suicide.
After getting out of the psych ward at the nearest hospital, she waited a week, and then ran away again... atleast she didn't try to kill herself this time. My parents finally got the feeling that they needed to do something, so my mom started to research treatment facilities that my sister could go to. My sister had always had a problem with eating, so when my mom came across a place that was meant for anxiety and eating disorder, my sister was on the next plane.
Saying my sister gave everyone a hard time at the treatment facility would be an understatement. There was a point when my sister was moments away from dying. After that, she had a tube up her nose for three months. Eventually, I was allowed to visit my sister. We had family counseling and my sister promised she would try to get better. Bvjcfduixkvcnfrjuidkcvjnf!!
A couple days after my sister got home, (on the day after christmas), I realized my sister was eating less than she had been eating before she went into the treatment facility. A month after that I heard her vomiting on a daily basis (we shared a bathroom). It took my parents about six months to realize she was worse than before.
That is about where we are at now. My parents have tried to get her help, but there have been times where my sis has swore she would kill herself if she wasn't left alone! Right now,though, she is in the hospital getting tests and who knows what else (no one will tell me anything).
How has this all affected me???????? Well, let's see, I cut myself daily and cry myself to sleep every single night!! I used to be a straight aa student but in the past year my grades have dropped tremendously! My sister says I am the only reason she is alive (aparently I gave her hope or something), but I now I wish she would have died the first time she tried. somedays I wonder if I should even be alive!

[anonymous]

my younger sister developed bulimia while i was away at college. she was doing better for a while but is relapsing. when she was initially diagnosed i felt extremely isolated and alone. i wanted to help her, but at the same time i was extremely angry with her for what she was doing to herself and our family. it was a lot for everyone to deal with, and i was jealous of the attention she received. i felt invisible because my parents were so worried about her all of the time -- they still are. i also frequently felt jealous because my sister is always complimented for her thin figure. i know that i should not have felt jealous of that attention, but it is difficult to ignore and hard to remind yourself of what a normal body type is. i often feel fat compared to my sister even though i know i am at a very healthy weight. i have tried talking with my parents but they are too focused on my sister to have the emotional energy to deal with what i am going through. i wish there was more advice out there for siblings. it's hard to keep a positive head sometimes, and more importantly to know how to support your sibling. i try to be as loving and supportive as possible when i see my sister, however underneath my own inner struggle is hiding.

[anonymous]

my younger sister, 2 years younger (16) has bulimia and anorexia, and even though I'm old enough to know better, the feeling that I'm not as important or invisible is a blatant feeling and I feel rejected day-to-day by my mother. and the stress I see put on my own mother by my sister is the thing keeping me from wanting help with my own eating disorder that's been hidden and probably pushed into the back of everyones thoughs for the past years.

[Me]

My sister has an eating disorder. I will be 22 in a few days shortly after she will turn 19. My sister entered treatment when she was a junior in high school. But, has recently relapsed at that time I was in college many states away. I was hurting a lot more than my parents realized or at least I felt like I was hurting more than my parents realized. There was much more there than worry that my sister would die. Since my sisters relapse I have been thinking more about why I was so emotionally effected and this is where I am at now:

I knew before they knew. I knew for years. I said for years she had an eating disorder, that she was getting one, that something was not right I said it since she was in 5th grade. Five years later when she just got undeniably out of control they figured it out. For years I watched, listened, and worried. Before my parents saw and worried. She now admits she was purging in 7th grade and that it started around 6th grade. I was right DAMN YOU. For years I was told off for speaking up, for years my mom especially made me feel awful for saying what was hidden to her. During my moms emotional ride I ended up listening to her problems and feelings a lot because she had nobody to really talk to. So I made it my mission to help her and keep a lot of my feelings inside. My mom and I have never had a great relationship and the relationship we have now can not with stand this truth. I doubt she remembers anyway.

My advice to parents:
Realize that your children probably have been watching, dealing with, and being affected by their sibling waste away longer than you have. Give the other kids the same emotional support you're giving the one with the disorder.

[ccj]

i am in that exact situation. my little sister (12 years younger) has struggled for several years and has not received the help that she needs. we are very close but since i live overseas, i have not been able to provide the support that i would be more equipped to provide from home. moreover, we both feel her problems largely stem from issues at home. i experienced different but still emotionally challenging states of mind while living at home and can relate to her. are there more resources for siblings? so many are geared towards parents and i don't think ours are in the position to help. i will be moving back home soon and am hoping to help but want some resources. thanks!

[KC]

Very interesting, important, and TOUGH question!

I think a major thing I wish had been different in my family was honesty. There was a lot of secrecy around everyone's problems, which I think made us as siblings more competitive, and less open/honest with each other, and afraid to ask for the support we needed. We felt very alone, when in truth we had more in common than we knew.

I need to explain. My situation is probably different from the intended question in that I have siblings who have suffered from eating disorders and depression, but I have too. Two of my sisters were anorexic, and I was both bulimic and anorexic. But because there was such a big age difference between us and our disorders happened at different times, and since I was the youngest, I had no idea. I was a little hurt that I had never known about my sisters' problems and then ended up with the same one. I guess I wished I could have been warned in some way, or known that I had someone to talk to that would understand.

Second, I was the only one in my family who received treatment for my disorder. So the other two wanted to help and recognized themselves in me, but they didn't even understand their own EDs very well. I'm pretty sure that I triggered them as well. I've felt guilty/spoiled for receiving help when they never did.

Third, a different sister (we both still lived at home) was undergoing testing for cancer, and she was very depressed. I definitely sensed that there was a lot of concern from my mom, but I didn't know there was a problem - I only knew that I wasn't getting as much attention, was also depressed, and I guess I was jealous too. I wish someone had told me.

So in conclusion, I wish my family had been more open - so we all would have been more understanding and understood.