This post isn’t just for parents of adults with eating disorders. It’s for parents, spouses, grandparents, cousins, siblings, friends, loved ones, colleagues, neighbors, uncles, aunts, children, and in fact anyone who knows or cares about an adult with an eating disorder.
The emails that I get from parents of adults with eating disorders are those that I treasure the most. I am not sure why I appreciate them so, as they hurt like hell — far more than even the emails I get from desperate sufferers. I think it might be because when parents of adult sufferers write to me about their adult children they could have been writing about me. In doing so they remind me of the fact that I recovered and got out of anorexia and flood me with gratitude for that.
These emails drip with hurt. And so they should. You see parents of children (the live at home school-age sort) with eating disorders are existing in a place of luxury compared to parents of adults with eating disorders. Let me explain: When the sufferer is a child, doors can be locked, rules can be set, phones can be confiscated. Action can be taken in order to help that child become well. Family-based therapy works! It is difficult, but it works. Parents of children with eating disorders have the ability to make their children well. They need education on how to do so, they need peer support, they need resources, but they can take action.
And even then, parents of children with eating disorders suffer ptsd-like symptoms from the trauma and stress of parenting a child through an eating disorder. So they should. It is traumatic. That is something that as a community we need to recognize and support for.
Parents of adult sufferers of eating disorders don’t have the advantage of being able to lock their grown child in the kitchen until a meal is finished. They often don’t even have the luxury of being able to bring up the subject of food and eating because if they do the phone is hung up, or the front door is slammed and a car started.
These are also the emails that haunt me the most for the simple reason that I often have to write “I don’t know,” or “I don’t have the solution here.” That fucking burns. Write to me about how to treat yourself for anorexia and I can tell you how I did it. Write to me about how to feed a child with an eating disorder and I can tell you who to talk to. Write to me about how to stop exercising obsessively and I can give you a plan. Write to me about how to achieve weight restoration and I can set you up.
Write to me about how to get your adult child who lives in another state and won’t even talk to you or acknowledge that they have an eating disorder to eat and I’m frustrated by my inability to give you a boxed and ready to ship answer.
Hope
We have had some breakthroughs. A number of parents now I have instructed to leave my book on their adult child’s doorstep in the hope that they will pick it up and read it. A couple of times this has resulted in the sufferer actually reading the book and contacting me. (That still blows my mind, as when I was sick I would have thrown that book back in my parent’s face — but then, I was a particularly hard case.) I cannot express how happy that makes me. Truly.
The thing is, if you can get an adult sufferer to talk to me, I know I can get them into treatment. If they will talk to me that is the first step to accepting recovery is something they want. If they will talk to me I can throw their eating disorder arguments back at them — because that is another book I could have written.
Other times I have been able to work with the parent to work out what their adult child might respond to. Something that has worked a couple of times is bringing in a family member or family friend whom the sufferer has a good relationship with. One adult sufferer was finally reached when her old school friend drove three states to visit her and literally dragged her to inpatient help. The sufferer later admitted that if her own mother had tried to do that it would not have worked, but for some reason her old friend was able to.
I have known this approach work in so many instances now that I am interested in trying to work out what it is about having a less-involved loved one intervene that throws the eating disorder enough to allow the sufferer to listen to them. Whatever it is, I am thankful for it.
I also know that when I was sick, the people whom I pushed away with the most viciousness where those I loved the most. I think this is because they are the people who threaten the eating disorder. That’s a back-handed compliment I know.
Why parents need support
There are a number of studies on the effects of powerlessness. Most are done on adult males who have lost jobs, or are unable to support their families. I think that these studies apply to the population of people who have to watch an adult loved one go through an eating disorder. There are also studies that show that feeling powerless can lead to a reduction in executive brain functioning. Almost like a sort of numbing.
Long story short, feeling powerless in the long term is bad for one’s mental health.
If you have no control over an adult child it is no wonder that you might feel powerless when they don’t listen to you. You feel like you are unable to do anything to help them yet you have to watch them deteriorate. Torture.
The faceless abuser
I think that often parents of adult sufferers and child sufferers alike go through what is to all intents and purposes emotional abuse. If a partner spoke to and treated you like a child with an eating disorder does then they would be locked up. Trouble is; you cannot and must not blame your child because it is not them — it is their mental illness that is emotionally abusing you.
However, you do have to recognize the abuse so that you can deal with it.
Eating disorders are faceless abusers. While I am not interested in trying to attribute blame as I don’t think it helps anyone, I do think that understanding the symptoms of emotional abuse and ho to treat them is helpful
Symptoms of emotional abuse:
- Surprise and confusion
- Questioning of one’s own memory, “did that really happen?”
- Anxiety or fear; hypervigilence
- Shame or guilt
- Aggression (as a defense to the abuse)
- Becoming overly passive or compliant
- Frequent crying
- Avoidance of eye contact
- Feeling powerless and defeated as nothing you do ever seems to be right (learned helplessness)
- Feeling like you’re “walking on eggshells”
- Feeling manipulated, used and controlled
- Feeling undesirable
Longer-term symptoms of emotional abuse:
- Depression
- Withdrawal
- Low self-esteem and self-worth
- Emotional instability
- Sleep disturbances
- Physical pain without cause
- Suicidal ideation, thoughts or attempts
- Extreme dependence on the abuser
- Underachievement
- Inability to trust
- Feeling trapped and alone
- Substance abuse
What can you do?
#1 – Prioritize
I just tricked you. I knew that if I put the real subject of this point #1 as the header you would have skipped over it. You’d have sighed and thought “yeah, yeah, I’ll skip to point #2 and hope it actually tells me something helpful.”
Now that I have your attention, I want you to read this point #1 really, really carefully. If you remember one thing from this post, let it be this: you have to look after yourself.
Yes, the real header to this point #1 is “Self care.”
Don’t roll your eyes. I bet you that whatever you are doing in terms of looking after yourself is not enough. You need to treat this situation like trauma, or grief, or some other deeply stressful experience.
Many parents I talk to suffer depression due to the long-term state of powerlessness and stress they are under. Some cry uncontrollably sometimes. Some can’t be intimate with their own partners. Some experience binge eating. Some drink too much. Some struggle with their careers. Almost all tell me that they no longer remember what it feels like to be truly happy.
Whatever you are already doing in terms of self care is not enough. The next couple of points will be more on how to do this, but I really would appreciate some parents commenting on this post (not on Facebook as people won’t see your comment) as to what you do to look after yourself.
#2 – Utilize peer support groups
Because chances are your friends, supportive as they may try to be, don’t get it. They probably don’t get eating disorders for a start. Even less likely they get what it is doing to you. Nope, talk to people who get it — other parents of adults and children with eating disorders.
F.E.A.S.T is meant for parents of children with eating disorders, but nobody is going to kick you out of the Facebook group or forum if you go there for support, and support and understanding is what you will find. Same with the Facebook group Eating Disorder Parent Support. While seeing a professional can be helpful, I actually think peer support is more important. Never underestimate the power of feeling that you are not alone in your experience.
I have recently set up a Slack group for adults in recovery from eating disorders and it is going really well. I want to set up a group for parents and spouses of adults in recovery too. This will function like a support forum specifically with caregivers and loved ones of sufferers so that you can talk with people in a similar situation. If you are interested in joining this group please contact me.
#3 Consider professional help
Not for your child, for you.
You’ve been through trauma, and talking about it to someone who knows how to deal with trauma might help you work through it or at least be prepared for it. Think about it this way; if we were talking about a situation of domestic abuse lasting a number of years you would probably send the victim to therapy.
Your child is not abusing you, but his or her eating disorder is abusing you. You may not be able to control the eating disorder, but you can take steps to control your own wellbeing. Doing so will leave you better prepared to help.
#4 Involve other family members
More times than is okay when I ask “do you and your spouse talk about your child’s eating disorder,” I get a negative. Not always, but enough times I want to address it.
One woman told me she didn’t feel it was right to “bother” her husband with it. Obviously, Ms. Feminist over her flipped her lid at that. If you are intimate enough with someone to make a child you are intimate enough to discuss said child’s health.
Here’s the kicker: when she finally did talk to her husband about their child’s illness, he was not only massively supportive, but he expressed gratitude at her involving him! Turns out that all the time he had been worrying too but was too scared to ask about things because he didn’t think his wife wanted to talk to him about it.
Eating disorders affect the whole family. They do not go away if you don’t talk about them. You cannot pretend an eating disorder doesn’t exist and hope it will just go away one day. Chances are that other family members are just as terrified as you are. I suggest calling frequent family conferences where you talk about eating disorders in a businesslike manner. Set goals, do research together, and create action items for the rest of the family to help them manage stress.
Final note:
My mum often tells me “you never stop loving your children, no matter how old they get.”
Just because your child is an adult doesn’t mean that you are less deserving of support when they are sick then a parent whose child is younger.
More resources:
http://www.helpguide.org/articles/ptsd-trauma/emotional-and-psychological-trauma.htm
http://www.nspcc.org.uk/preventing-abuse/child-abuse-and-neglect/emotional-abuse/emotional-abuse-signs-symptoms-effects.
Love this, Tabitha. Please include me in your new group. You have my contact details!
Jen x
My 22 year old daughter is starving to death. My husband and I are at a loss.
Please email me and I will see if I can help support you
I have just finished reading your comments and already i am crying. My daughter is 22 lives at home has dropped out of college. She has an eating disorder and suffers from depression. Has harmed herself on more than one occasion. I have tried repeatedly to get her to see someone and she wont. My heart breaks daily as I see my beautiful daughter behave in this way and i am powerless. As a family we have all begged her to get help.There is no where to turn to as she has to do this herself.The clinics say I have no control because of her age. What does one do??
Hey Beth
So sorry to hear that. This is such an awful and destructive illness.
Have you tried sending her a blog from here and asking just that she reads it? The half-life blog often gets people on board with recovery more if they will read it.
Hi- how would I find the half life blog?
Thank you as a mother of an adult with an eating disorder this article is so kinad and compassionate. My daughter is 42. She is seeking treatment but resistant to this and is hopefully going on an oupatient program 4 days a week for 8 weeks. I am seeing a psychologist but do feel isolated at times. I am in 2 choirs have other interests which I am determined to keep up. I am in Australia
Hi. I can empathise totally with you Dianne. My daughter Sara is a gifted musician age 37 and had been anorexic for 12 years. Her weight has dropped from 13 stone 7 lbs to now 6 Stone 10.. I don’t know how to helpher. She lives alone and I am so sfraid. Can anyone help me plea se.
Thank you Tabitha for so beautifully including parents of adult sufferers in your work! Our daughter is 23 today. I honestly did not think she’d still be with us. On your point about self care and asking for thoughts, something to consider is ‘modeling’ what real life looks like. It was SO hard to find that place of “I will not love you to death” and this is what life looks like on the other side. We never once stopped believing she’d find her way out and I do feel that by modeling for her what life could be has helped her to begin to take those steps into recovery. I would love to be a part of the support network you are building for parents of adult affected individuals. We’ve done the ‘powerless’ part and have successfully moved away from that into a life worth living, for all of us!
I have a 20 year old D, she has been in and out of all levels of care for the past 4 years. She is currently in PHP, has a week to regain weight or she will be cut. Only out of residential 2 weeks. She is living with her dad so she can attend php with treatment team she has worked with. I get the wrath and Ed feed. I have been told to hang up if she cant have a non ed conversation, that is for her treatment team. So sad and exhausted
My 21 yo Daughter is restrictive/BN, also has a problem with street drugs. She will occasionally, maybe once every 6 months, admit to the ED. Never long enough to get treatment. Her b/p is a daily event. Sometimes hours on end. I gave her an ultimatum, get treatment or move out. She left for RTC but never showed up. Instead She will go for drug treatment but never for ED. Once ED rears its head she is asked to leave. She has been in at least 6 places in 5 weeks. I am so afraid for her. She dropped out of HS in 10th grade. Cannot function normally. I am at a total loss.She would not read a blog, in fact she would get angry. She is a very difficult case. I even hired an interventionist once. She did agree to go, but walked out. What else can I do?
Carol – you can only do your best. That’s all. Your daughter is an adult and you cannot make her do anything. I hope that she soon sees that there is so much more to life than her illness and chooses recovery
Add me. Please! I can’t watch my adult D die. I tear up just seeing her so frail and can’t do a damn thing! F Y eating disorder!
I feel the same way! It’s horrible living in fear and watching your child go through this.
Hi Tabitha,
My younger sister has battled this awful disease for 30 years. She is now 47. She has had periods over the years where she was healthier and eating regular meals. But during any periods of stress, she has reverted back to the depths of the disease to some degree. She and I have been closer over the years and live within an hour of one another. About 3 years ago there were some inappropriate situations at her job and she was brave enough to stand up and call out the director of her department to the dean of the school. It was very stressful for her and took over a year to resolve. She ended up moving to a different department within the college, however, I watched her revert back once again to her disease. I had hopes that in her new position she would begin eating again and gain some weight. Over the past year I’ve watched her become more isolated, unhappy, avoid social situations or show up and leave within an hour or so. I saw her today when she picked up our kids to spend some time with them. When she walked into our home, I became nauseous and almost burst into tears. She’s a skeleton. She’s the thinnest I’ve seen her since she was in the deepest depths of the disease 30 years ago. I’m so afraid for her. I’m a RN and I know what can happen to her heart, organs, etc. I confronted her in a loving way telling her I was extremely worried about her. She acted surprised “one of your symptoms above”. She said she was fine. I told her I didn’t believe her, hugged her, told her I loved her and went back inside our home. She had my children in her car and I didn’t want to make a scene but wanted her to know, that I know. I searched the internet on how I can help her and found you. I ordered your book and plan to give it to her this coming week. I pray she reads it. I pray she reaches out to you. I pray she survives.
Tabitha, thank you for writing this blog piece. You describe exactly how it feels to have an adult child with an ED. My d is 21, lives with us, and has suffered since 2012. She is our only child. I feel horrible for the mistakes I have made. When she was just 14 she admitted having and ED and she told me ‘you have to feed me’, but I was unable to do that as she reacted by flying into a rage and I was completely flummoxed at that behavior. Or, she had me make her protein shakes but she wouldn’t drink them in front of me and I later discovered she was pouring them down her bathroom sink. Once she began purging with a vengeance she admitted that her teeth hurt. I made an appointment with the dentist but I think she was giving me an opening for a discussion but I dropped the ball. She told me 2 years ago if she couldn’t purge she would kill herself. I should have called her pediatrician for advice but instead I cried for two days and began going to Al Anon. In other words, as I look back, she’s been asking for help from me that I have been unable to provide. I feel like there is something wrong with me as a mother. I think about the strong mothers I know and I believe they would find the courage or whatever it would take to help their child heal. It has taken me years to acquire compassion for her suffering – not that I have been unaware of her suffering – but my gut reaction had always been anger and frustration. Only now can I feel compassion for her. I do engage in self care and am involved with Al Anon and NAMI for support. I have surrounded myself with supportive people and activities to the best degree that I can and my heart breaks that I cannot help my adult child. My husband and I frittered away precious time disagreeing with each other as to the best course of action when she was younger and we had more influence. We have individually made mistakes which is costing our beautiful, talented, intelligent daughter all the things a 21 year old should have in their life. I have printed out your “Half Life’ blog article, and my d is on her way to an intake after bingeing and purging for the past hour. She is vegan – this is so clearly not good for her but something stops me from demanding she not be vegan. I feel so helpless, powerless, weak, incompetent. Sometimes I just want to curl up and die for being such an incompetent parent that I have been unable to help my daughter when she has come to me for help in the past.
I would be interested in being involved in a support group for parents of adults with eating disorders.
Barbara
I am so happy to have found this blog. My 27y D. has an ed and I just found out how bad it really is about 4 months ago. I suspected but was not aware how bad. She lives with me and sometimes when I look at her I could cry, and I do in private, she looks so thin and her skin looks grey. I am alone with this, I have no family really to talk with. I am now trying to find some sort of support now since I am feeling exhausted and don’t know what to do. I am afraid to ask her if she has eaten, when I know days pass by and she hasn’t. I am lost…I am working, but not making enough money, she works but not alot. I tell her to put her online groups and health first and work second. It is just the 2 of us, and we are currently living in a hotel in Arizona, trying to find something more stable and in a good area. I think I need to speak with others in similar situations.
I am a 30 yr retired floor nurse. I never had a pt with an ED. After my husband died 4 yrs ago . My adult son had lived with us and the two of them were best friends. After his death, my son wt was 240lbs. He started running and eating one lean wt watchers meal.he lost down to 135 look good for 5ft 5in. But the weight kept coming off and his sister and I told him.you don’t look healthy .you need to see a Dr and get labs.Refuse and denial . Finally he was so weak I called rescue for him and cancer was ruled out. We are on our 5th hospital admission. The 4th discharge home.I ask about his prognosis. His prognosis is good. He just has to eat.his Medicaid did not approve a ED place. He didn’t qualify for input physical therapy.so this last time he came home I ended up giving water thru a straw like I was feeding a bird.the system doesn’t work for these patients.I called the rescue this 5th time. And I said to the dr case manager.if he is discharged ,I can’t take him home.he is 49 well educated but hasn’t held a job for several yrs. Iam 71 and seeing a cardiologist because I ended up in er with chest pain. Thank god for a friend that has help me navigate our mental health system.we are waiting on acute input psychiatric bed.as he spends each day in hospital . How do u help these pts and keep your sanity . I have been at Witt’s end. HELP
I need a current support group and ideas about how to help a 28 year old daughter. She refuses to admit to any problem. She is a walking skeleton and her siblings and I fear for her life. Please help.