May 4, 2024

Guest blog: Stop feeling guilty

Sara Satir, coach and mom of a child with epilepsy, on guilt and living guilt-free

A conversation between Carole Bolliger, Epi Suisse (Swiss patient organisation for epilepsy), and Sara Satir, coach, columnist and mother of a child with epilepsy. Re-printed with permission from Epi Suisse

Feelings of guilt can be very stressful for parents of children with epilepsy, as they feel that they may have caused the condition or that they are not doing enough to alleviate the symptoms.

Sara Satir

Coach and mother of an affected child


Our 7 favorite tips from the article:

Focus on what the child can do and all the wonderful things you experience together. Holding on to these moments of happiness can be very empowering in difficult times.

Address problems openly and honestly, do not gloss over them and seek professional help if necessary.

Network with other parents of affected children. This takes away the feeling of being alone.

Know that what you do is enough.

Self-care is always also care for the child.

If you are a friend and relative, and don't know what to say, simply offer support.

We all belong to society - just as we are. And everyone has the right to participate.

Continue reading for the full interview.

Carole Bolliger: How common are feelings of guilt among relatives of people with epilepsy and what factors can contribute to this?

Sara Satir: In my practice, I see many parents of sick or impaired children who are plagued by feelings of guilt. Various factors can lead to this: for example, if the child has a hereditary disease. The parents wonder whether they have passed something on. Many mothers wonder whether they did something wrong during pregnancy. However, these are always irrational feelings of guilt that are not medically based on facts. Nevertheless, many parents of affected children struggle with this.

I also often hear parents ask whether they are doing enough for their children. Could something be done differently in terms of support? Does my child need more or less therapy? Parents with healthy children are also familiar with these questions and concerns. But with sick or impaired children, the feelings of guilt increase. Specifically with children affected by epilepsy, parents often ask themselves: could the seizure have been prevented or what did they do wrong to trigger the seizure in the first place?

On the other hand, some parents don't feel guilty, and they are not "weird" or "abnormal".

It is high time to throw the 'guilty ball' back

Sara Satir

How can relatives of people with epilepsy better deal with the uncertainty and worries that can accompany this condition?

It is very important that you don't always just look at the child's illness or impairment, but also focus on what the child can do and the wonderful things you experience with them. Holding on to these moments of happiness can be very strengthening in difficult times. It promotes resilience. It is also important to get help and accept it. As the saying goes: "It takes a whole village to raise a child". With a sick or impaired child, it takes an even bigger village.

What are other challenges that trigger feelings of guilt among relatives of people with epilepsy?

Apart from what has already been said, it can be a great challenge to find a balance between the needs of the affected child, the needs of the siblings, and your own needs. Parents often also feel guilty towards the siblings of the affected child. The problems should be addressed openly and honestly, nothing should be glossed over and professional help should be sought if necessary.

What kind of support and resources are available for relatives of people with epilepsy who suffer from feelings of guilt, and where can they find help?

I recommend networking with other parents of affected children. This takes away the feeling of being alone. If you carry feelings of guilt alone, they become stronger. Talk about it in coaching or therapy. Don't be ashamed or think you're weird for having these feelings. There are also many good books on this topic. I try to encourage my clients to talk about it. For many, it's still a taboo subject. You should also talk to doctors about it. They sometimes make careless statements that reinforce feelings of guilt. You should stand up clearly and reject the blame. It is high time we threw back the ball of guilt. Because as parents of sick or impaired children, we already have enough to bear.

What other strategies are there for coping with feelings of guilt in relatives of people with epilepsy and how can these strategies be supported?

There is no one-size-fits-all solution. I think it's important that parents are aware that all parents struggle with feelings of guilt from time to time. Both those of sick and healthy children. Parents should be taught that what they are doing is enough. Because parents act with the best of intentions with all the resources they have. And that is enough.

How important is it for relatives to look after themselves and what measures can they take to promote their health and well-being?

Raising a child is not a sprint, but a marathon. Only those who take care of themselves can master the long, hard, and sometimes rocky marathon. Parents shouldn't feel guilty about giving up their children to have time for themselves. If you look after yourself well, you can also look after your child well in the long term. Self-care is therefore always caring for the child.

How can friends and family members of people with epilepsy help to reduce feelings of guilt?

Relatives, families, friends, and relatives should be aware that careless statements can increase the feelings of guilt of the affected parents even more. The uncertainty is already great. If you don't know what to say, the best thing you can do is simply offer your support. Careless statements such as "You should have been more consistent" or "I would definitely try therapy xy" should be avoided. You have to be aware that it is already more than enough for the parents to bear.

Those affected can also have feelings of guilt.

Feelings of guilt are part of our biological make-up. Everyone can have them. But they are not the same for everyone. There is no such thing as THE feeling of guilt. I've also worked with people with epilepsy who have feelings of guilt and who are uncomfortable when it's all about them. Nobody is to blame, I think that's important. Not the person who is ill and not the healthy person. We all belong to society - just as we are. And everyone has the right to participate.

That sounds good in theory. But in practice, it looks different.

Yes, and that makes me angry that society is so exclusionary. Unfortunately, we live in a standardized world. If a person leaves this norm, it must automatically be someone's fault. There must be something wrong with that person. It's utopian, but my wish is that everyone simply belongs. Then the issue of guilt would largely disappear. The people and families affected would get the help and support they need. Without having to fight for it.

And how can this "utopian" state be achieved?

We need more open communication and more awareness campaigns for invisible hurdles. This is also the task of organizations such as Epi-Suisse. The more visibility, the smaller the hurdles that stand in the way of inclusion. Of course, this is a major political issue. We are still at the very beginning in Switzerland, but the inclusion initiative, which will be launched in October, is certainly a good and important impetus.

Original article