Eating disorders can be a terrible burden both for those who are ill and for the relatives. - The last thing I wanted was to hurt and burden those I love, but the forces of disease are so strong.

Image: Dreamstime (with licence)

This is the topic of this guest post written by Nina, who is a trained doctor and who has struggled with severe eating disorders for a number of years. She is passionate about focusing on and creating more understanding of what it means to suffer from eating disorders. 

I've been thinking a lot the last few weeks. Especially after I became more open, and got more direct and honest feedback from both parents and friends. Not that I have not thought about this topic many times before. Very much indeed. The conscience has gnawed a lot in recent years, so to speak. Both to my sister, parents, my bonus family, grandparents, and friends. Yes, most of the time it has been hellish for me to live with this disease. But it's not just me who is affected.

When I became ill 18,5 years ago, it was also the start of many tough years for those closest to me. That was the last thing I wanted. To hurt and burden those I love. However, the disease forces are so strong. They make you a different person than you really are. And suddenly the domino effect becomes apparent. My suffering became the suffering of others.

I do NOT mean that the sick should take responsibility for protecting their loved ones. But I think it is very important, especially for the environment, to understand how incredibly tough it can be to be a relative of someone who is struggling with eating disorders. Both at a young age and well into adulthood. Both for short medical history and long medical history. And the longer the disease lasts, and the more relapses you have, the heavier I think it will be for relatives and friends.

It is not just the affected person who need support. There are also those around. 


Easy to blame the parents

Many people have the attitude to eating disorders that it is probably just eating! And that parents should be able to take responsibility for their child not perishing. It is as far as "okay" as long as you are under 18 years old. At least easier than when you have reached adulthood. Because if you are not of legal age, the parents have decisive words and the right to decide. They can put you in, forcibly treat you, "force" you to improve. Unfortunately, there is no guarantee that you will recover in the first or second or third round.

Many also criticize parents for not intervening until they actually do. Both when the child becomes ill in the first place, and in case of relapse. Unfortunately, the reality is not that simple.

We must remember that for these parents it is the CHILD you love so much who is suddenly very ill, maybe even in danger of dying. Of course you try to help! You act. Try to limit the damage. Most people do their best. The problem for many relatives is that the patient often becomes dismissive, shuts himself in, closes his ears, refuses to deal with the problem, and sometimes can also threaten the relatives not to do anything.

Threats that for the relatives are very real. And that might make them terrified. We must also keep in mind that a relative is not a professional. Most of them have no medical education or competence to judge how serious the disease actually is for their children. In addition to what is dangerous weight, what is dangerously low blood pressure, what is dangerously low blood levels, it varies from person to person. Some endure a lot. Others tolerate little. And it is impossible to predict either for relatives and health professionals who tolerates a lot and who tolerates little.

It is easy to place the responsibility on the parents when minor children become life-threateningly ill. Just remember that the reality is very complicated when it comes to this disease. Parents who are genuinely fond of their child, deeply concerned, and doing "everything" for the ill person, may still end up judging the situation incorrectly. Without making them scapegoats. In some cases, parents are largely to blame for the child becoming ill. But many parents are sincerely engaged and concerned, trying their best to help their child, but experience failure. They experience being rejected. They experience that they do not know if they can trust their child anymore.

I think no one who has not experienced this can understand how incredibly hard this can be, especially for parents and siblings. An eating disorder affects the whole family, and everyone falls victim to the psychological terror that the eating disorder exerts with all its forces against the person who is ill.


My own medical history

I got sick when I was 16 years old. Ergo still within the limit that my parents could have had a say. But even though I got sick then, it took a while before it was evident. I was a healthy and fit teenager with a healthy normal weight. I was not overweight. But I still had a little to go on. It took time before the weight went down. Also because I developed bulimia at about the same time. 

Some of my friends understood earlier on. They were with me most of the day. But when they confronted me, I just turned away. With trivializing comments and explanations.

I was 16-17 years old. I was about to grow up. Then you are not necessarily so much at home. It is "easy" to fool parents and siblings for quite some time. Not because one is evil or naughty, but because the disease completely controls the behavior and takes over one's personality. 

When it first became clear that I had a serious problem, it was "too late". I was grown up by definition. I decided for myself. The consequence was that I could not be forced into treatment as long as there was no danger to life and health. And I was simply not that sick at that time. Not of the eating disorder, at least. 

I started in outpatient treatment when I was 18,5 years old. But I went just to calm those around me. I was terrified and not at all ready to admit that I was ill or that I needed help. The whole situation must have been very frightening for those closest to me. To sit and watch someone you love and care about destroy their body in a life-threatening way, without having any power to stop that person ... it must be absolutely awful. 

Not least living with lying and manipulation and aggression and irritation in response to all the advances one tries in many cases. This applies to friends as well. They are affected more than many people think. Especially when you are a little older and have a closer friendship, and not least have greater opportunities to understand the extent and dangers of this disease.


- I was very ill

My parents have tried to help me as best they can, based on the prerequisites and resources they have. Maybe they could have done things differently, especially in the beginning. But it is easy to be wise afterwards and play the blame game.

I was sick. Very ill. I was not ready for treatment. My head and my body just wanted one thing. Even though I knew how dangerous it could be. Whatever they said did not work. This also applied to friends. And teachers. My conscience gnawed intensely, because I eventually felt how burdensome my illness was on the family. At the same time, I could not take up the fight. The eating disorder was my friend. I did not know how to live without. Simply.

It has clearly been very hard, especially for the family, and for some more than others. When you can't even remember me as healthy. When you can't remember a time when everything in the family life did not revolve around food and treatment, and my illness to a greater or lesser degree. Who has lived with being afraid of losing me for so many years, been afraid that the damage will be great, and sad because one understands to a greater or lesser degree that I have not been well. 

To be lied to or to hide the actual circumstances through silence, in such a great deal over such a long time, it also understandably does something with the trust between family members and the ill person. Also friends, for that matter. I just have to respect and understand that. Trust must be rebuilt. 

It's as much my responsibility as theirs, actually. And in some relationships maybe as much or more.


The complete feeling of powerlessness

Being a relative often presents great challenges. 

The child, sibling or friend you thought you knew changes dramatically in a short time. Many feel like bad parents. Struggling with a bad conscience as well. Not having the power to help their child. Having to live with constant vomiting and loss of food control, and restrictive food patterns and "strange" eating habits and rituals, it does something with the whole family. 

Again, it is NOT the patient's fault or responsibility to make that happen. The disease is strong and dominant in many ways. But it is important that the relatives and treatment services of those closest to someone with eating disorders also receive support and care. They need to be asked how they are doing.

My grandparents have probably also had it much harder than what I have neither been able to relate to nor think about. Many grandparents adore their grandchildren. And they do not know what good they can do for them. Sitting powerless on the sidelines, and at least without rights and influence... many must feel incredibly helpless. 

Seeing the grandchild struggle, not moving on, disappearing more and more, becoming more and more repulsive, having to give up dreams they have had for education and work because the disease demands everything. It's hard for a grandparent too. When my grandfather died, I could only imagine that now I only have Grandma left. None of the other three have experienced that I have managed to recover. I felt guilty. At the same time, the disease still has an iron grip on my head, and make me fail, again and again.


To stand on the sidelines and be afraid that your friend will die

For friends, I also think it's very tough at times. I have been incredibly lucky. I've had friends all along who have not cut me off completely. Regardless. But they have needed distance and break from time to time. It is difficult to understand there and then. It's easy to get hurt and upset and feel rejected. I have felt those feelings myself. 

But now that I have grown older and gotten some things more at a distance, I understand well that they have not been able to be 100% to the place for me all the time. Especially when I have not wanted to talk about things, have not wanted to share anything, and to a large extent have just pretended that everything is fine, when it is easy for them to see that it is NOT. 

Standing on the sidelines and seeing someone you love or care about become more and more a shadow of yourself, knowing that person is hurting by overeating and vomiting, being terrified that your friend will die of the disease. I myself have close friends in the same situation. It is very hard and difficult and challenging. And I have great respect for those who remain, despite the fact that it is hard. Because when you are ill, it is crucial that you do not lose all your friends. Simply.


Friction between relatives and the sick

Another major challenge is that frictions often occur between relatives and the ill person. Because of attitudes. 

Comments. Wording. Actions. Which for the ill person is triggering and hurtful. But which from the relatives side is not meant to hurt.

This is usually due to a lack of knowledge and experience and understanding. Messages about tightening up, getting along, "just eat!", just get back to school or work, comments on the body, on weight gain or weight loss, comments on what you eat, how much you eat, how fast you eat. All these hurts.

And many, many more factors could be mentioned. It is usually an expression of frustration and fear from the relatives side. However, fo the ill person, these are just confirmations that they do not understand anything, that they judge you, that they do not like you anymore, that you are not thin enough, or that one ends up withdrawing, largely because one is afraid of being prejudiced and getting hurtful and triggering comments. 

It is difficult to speak the same language when it is impossible for the relative to fully understand the situation of the patient. If you have not been ill yourself. Especially when we grow up, we must probably try to give parents and siblings and friends a little more leeway. Although it is very difficult and costs a lot. At the same time, relatives may have to show a little more understanding of the reactions that may come, without resorting to silence and judgment and asking the sick person to just get along. 

The fact is that understanding each other's point of view when you are in the middle of it all becomes almost impossible. Then it is easy to end up in conflict instead of supporting each other. Understandably. 

And siblings quickly end up between all the chairs. Experiences that the main part of the parents' attention and time is spent trying and helping the sick person. Who may not want help once.


Eating disorders affect the entire social network

An eating disorder does not just affect an individual. It affects the whole family and large parts of the network. In some cases, of course, it is family members or what were thought to be friends, which is the direct or strongly contributing factor to the patient getting this disease in the first place. This makes the situation very complicated. In many ways. 

Even though I have been an adult by definition most of my illness, we have then been offered relatives' talks / meetings. Both outpatient, at the GP, at RKSF and at Modum. We've had some. With varying degrees of success. 

It is important to see the whole family. Also when the "kids" have grown up. Both from the treatment services, and from parents and siblings' friends and other relatives, so that the family can also get support and help to get through difficult times.

There are many more sides and aspects to this theme. MANY. I could write page up and page down. About own experience and thoughts. About my relatives 'and friends' feedback and reactions. About stories and experiences I have heard from other patients, and from other relatives. 

My main point is that there is never just one "victim" of an eating disorder. There are many. The disease can be a great mental strain, not only for the patient, but also for those around. It is important for society and the environment to understand how complicated this disease is, to what extent it is about getting along, and how little power parents in reality have over their child when it comes to stopping the disease. 

It's easy to judge. It's easy to be wise afterwards. But keep in mind that this is far from black and white and simple. It is very complicated. Ask instead of judging. Give a hand instead of being a knower. Give advice when the relatives actually ask for it. Be present. Show understanding. Take care of the family. They need it too.


The bad conscience over everything the disease has destroyed

I will probably never forgive myself for the pain and insecurity and fear I have exposed both parents, little sister, bonus family and friends through all these years. Says again that it is not my fault or my responsibility. But still it hurts to know. Because I love them. I need them. I want to show that I get better, that I get a job, that I master, that I feel good at times. I do not want to make family and friends sad. 

It especially hurts to know what my little sister has had to endure and go through all these years. I can never make up for it. It gnaws at me a lot. 

For my little sister was very longed for and welcome, also by me, an only child of 6 years. With potentially great jealousy and envy. Not a second! Not a single second! I was just happy that she came, that I had a little sister, that I was no longer an only child. I'm big sister. I should have taken care of my little sister. That was my job. In my head and heart at least. 

At one point or another, I largely stopped being a big sister. I became a burden instead of a support and helper. It does not feel good at all. 

Much has been destroyed and become fragile because of this terrible disease. As I said, trust takes time to rebuild. But there is nothing to do but anoint yourself with patience and give the other party the time it needs. And as one becomes more mature and reflective, trying to open up instead of rejecting. I have not talked about things. I did not want to say anything. I think that has made things extra difficult for my family and friends. 

Especially the fact that most of the time I have tried to give the impression that everything is fine and in order, when it clearly has not been. It does something with the relationships. It has something to do with being together. Without anyone being to blame for it. 

This is how this disease behaves for very many. It brainwashes you completely and controls both thoughts and actions on a daily basis. It is an obsessive demon that infects the soul. Simply.


Rebuilding trust is a long-term project

It is difficult to be a relative. It's hard to be a friend. It's hard to be sick. Although it can be very difficult at times; try to understand each other instead of judging each other and dividing responsibilities down to the smallest detail. 

Relatives; understand that the person in front of you who lies and manipulates and tricks and fixes, it is not the real kid or sister or your friend. It's the eating disorder. It's underweight. It's an obsessed soul.

And patient; you are not responsible. But as you get older, try making statements carefully. Do not judge your relative too hard because he / she does not immediately understand what your challenges are.

It is not meant to be exhorting in any way. I am by no means an expert on this. Far from it. The only thing I know is that the situation and the relationship between my divorced parents, my sister, my bonus family and me, and also my wonderful friends, during these years has been difficult and complicated. 

I now know that I can not change what has happened. I now know that most of what has been done and said is out of care and consideration and concern. I can not delete the last 18,5 years. Even if I wish I could. Both for their sake and mine. The only thing I can do is try and be more open. Stop lying. Build trust again. And work as hard as I can at my own pace towards getting healthier and getting a job. Do not give in to the urge to give up. Even when everything seems hopeless.

Thanks to all my loved ones. For the efforts you have made in these long years. For everything you have contributed and tried to help me with and more. I have not been ready to recover. It is difficult to explain this. I will return to that very topic later. My main task in the near future will be to build trust again. That is not my sole responsibility. It is a shared responsibility. But if one is to get anywhere, both parties must be ready to be humble and to endure and hear the truth. Than as difficult as it is, in several ways.

The discussions that have been going on both in public and on social media in recent weeks, and all the thoughts that come to my mind in that context, it goes deeper than I think. I love my loved ones. I'm starting to believe they love me. 

And that is, in fact, what matters most. I hope we can eventually find each other again, even though the scars after these years will be there for the rest of our lives.


Information for relatives

This is advice for relatives, taken from the Center for Eating Disorders:

As a relative, it is important to keep in mind that you can not change others. You can only change yourself. You can not make the sick person eat more or less, or stop vomiting.

The most important task you have as a relative is to be a support for the person with the eating disorder. It is important that you as a relative have knowledge of what eating disorder is really about, and what treatment options are available. There are no quick fixes. Try to "see" the other instead of worrying.

Praise that which is mastered, and attach your love to the inner qualities. See yourself as a strong and independent relative, who should not be a therapist, but provide support. Try to see the other and meet the other on the problems he or she has, instead of focusing on the food and eating.

- From the blog to Nina: The way forward