One of our Purple Foundation members, Krištof Heger, makes no secret of the fact that he has been living with epilepsy since 2009. Through his work in the Purple Foundation, he came to cooperate with Společnost E - a non-proft organization helping people with epilepsy. He became a member of their peer support team and in this interview, he will introduce the concept of peer support, what it means to him and what he has learnt along the way. Have a great read!
Krištof, what does peer support mean?
Peer support is mainly about sharing your own experiences with this disease and lending a helping hand to fellow affected persons. Some of them cannot cope with certain aspects of epilepsy, lack information, or simply need to share their experiences with someone who understands them because they have been through the same (and continue to do so daily). I consider it a wonderful service that naturally complements the professional work of neurologists. It offers a practical perspective on epilepsy in real life and advice on handling very specific situations. Our help is not limited to people with epilepsy, though. We also work with healthy people who have an epileptic in their family and want to learn how to help them, cope with it, and approach the issue.
What motivated you to become a peer?
It came naturally to me, as I've been internally convinced since I was a little kid that when people help each other, living in our society is better and more fulfilling. No matter the extent of help, anyone can do it - even with tiny gestures or a couple of words. Since I've had epilepsy for a relatively long time, I have experienced several situations related to the illness (both in my personal and professional life) that have had either a direct or indirect impact on my condition. I had to deal with them and solve them myself (I didn't have anyone in my surroundings who was going through something similar and would advise or share with me) and I thought it would be a waste not to pass all the gained knowledge on. You never know when it might come in handy for someone else and it doesn't cost me anything to do so.
How many people can count on you as their peer and how much time does it take? Is it manageable to combine this role with your professional and private life?
I can manage being a peer for two people at a time outside my work and other activities, but it also depends on the particular situation, the needs of my individual "partners," the form and frequency of communication, etc. In terms of time, it takes up a few hours a month (my personal maximum is 15 hours per month), but the aforementioned method of communication and its regularity play a significant role here (e.g. a big difference in communicating via text versus in person). At the beginning, peer support is usually more intense, because people want to ask about many things they have not had anyone to discuss with before. In time, the communication becomes more sporadic. We always base the contact on the person’s specific needs and uniqueness and never pressure anyone into anything they aren’t comfortable with. And thus, each peer’s communication with their clients looks different and is up to them to set it up. In 99% of cases, it is completely manageable for me (sometimes I’d even prefer a bit more, to be honest).
Společnost E is set on sending their peers out into the world top-level-trained. What was your peer training like?
I completed three all-day preparatory courses that I put into practice basically all the time, i.e. it has not been just theoretical education. All the knowledge was immediately applicable in real life situations - a course on the method and style of telling our own epilepsy story (so that we can draw our partners into the "story" and instantly create a bond with them; it also taught us to confront ourselves about things we are not comfortable or 100% at about), a course on active listening (a key aspect of peer support in order to meet the required quality level of the program) and a crisis intervention course. We also attend regular online meetings, where we discuss and share our experiences with individual clients in the team of peers, and with regular supervision, where we discuss our feelings about peer support with a psychologist. I must say that both issues are very stimulating and provide different perspectives on situations, which forces a person to constantly think about their procedures and improve them or adapt them to the needs of a given client. In addition, we have established an internal "Ten rules" document and a code of ethics, both of which we follow when providing peer support. It is certainly not enough to "just" have epilepsy to be able to perform peer support. It also requires a mix of acquired knowledge and innate qualities of the peer (which are difficult to learn).
What if someone wants to contact a peer, but is hesitant, shy, or afraid? What is your advice in this situation?
It's very simple – all you have to do is contact our peer coordinator or fill out the form at PEER podpora - Společnost E and the coordinator will then contact you, either by email or by phone (you can choose). They will talk details with you, introduce peer support and what to expect and then you can either choose your peer yourself, or you will be assigned one, based on internal suitability criteria. Please don’t be afraid to take the first step and reach out to us! I dare say that we are a group of highly empathetic and understanding people and we are open to any story - our goal is to help you, not scare you away. The initial contact will not be unpleasant for anyone here, on the contrary – we will be happy to hear from you!
Which situation have you considered the most difficult so far?
My most difficult moment was probably when I was communicating by email with an older English-speaking gentleman whose situation was very complicated (problems with epilepsy, other health troubles in the family, getting fired from work, small children, etc.). I sensed that he was frustrated, desperate and that he might not be far from considering a more radical solution to the situation... It may not have been a completely likely scenario, but even a tiny possibility of it must be considered by a peer in their work. Subsequently, when the gentleman fell silent (and we were unable to restore contact with him), the human brain immediately started to create catastrophic scenarios, which is definitely unpleasant. On the other hand, a peer then may start to ask themselves whether they really did their best and whether, paradoxically, they didn’t cause any further harm instead... Peer support brings such situations, too. It definitely has a darker side, I won't lie.
How is peer support valuable for you?
The main thing I take away from peer support is learning a lot of new things about myself (be it thanks to my peer colleagues or the clients themselves) that I can use to improve my life or adjust my opinions and attitudes for the better. At the same time, this work gives me insight into the thinking, behaviour and characters of diverse personalities with different stories and from different social environments. As a result, I am not thrown off by much and I can react more flexibly to everything that life throws my way. All the experience can be easily applied in my work and personal life, so it enriches me overall. The top priority is helping others and their satisfaction, of course - the feeling when I learn that my activity really helped someone is priceless. That is the greatest value, everything else is just a pleasant bonus.
Which moment of the peer support has been the most rewarding?
The most rewarding is probably the feedback (any, not necessarily only positive feedback) that I receive, whether from our team or from people who seek peer support. I guess everyone likes to hear that their work is going well and that they are great at it, basically a peer superstar. :-D On the other hand, even when you learn that your approach somehow didn't suit or help the other person and they feel misunderstood, it opens your eyes in a different way and offers you a whole new world to explore.
Are you planning to continue working in the peer program?
If they’ll still have me in Společnost E, then definitely! :-D
Imagine someone got just diagnosed with epilepsy – what are the questions they need answered?
Most often, these will be questions related to how epilepsy affects your everyday life, about new changes and adjustments or, on the contrary, activities you can resume without any trouble. They might need to ask about the treatment itself and its impact on the human body (e.g. fatigue, exhaustion, mood swings, irritability), how to manage family and partner relationships in connection with new restrictions (because epilepsy can also affect people around you to a large extent), how to manage work and stress, how to keep engaging in sports activities, and so on. We often talk about the emotions that this disease brings into life, too - fear, uncertainty, worries, frustration, anger, helplessness, resignation and how to manage and work with them. This is an equally important part of peer support and overall coping with the disease and its management.
What are the myths and superstitions about epilepsy that we, as a society, need to dispel and correct?
There are certainly many of these myths and half-truths. I would like to mention the one where people associate epilepsy with low intelligence or mental retardation - this is simply not the case and epilepsy itself does not affect one’s intelligence in any way (as far as I am informed). In history, we have learned of many important people who suffered from epilepsy and achieved great things nonetheless, for example Theodore Roosevelt, Prince, Dostoevsky and others. Other myths probably relate to the types of seizures and first aid - when people hear the word epilepsy, they immediately imagine a major seizure with loss of consciousness accompanied by convulsions. Seizures can, however, occur in many different ways, for example a momentary spacing out, or a temporary loss of control over parts of their body while being fully conscious. As for the first aid, people tend to prioritise moving the affected person’s tongue out of the way first or move and adjust it during a major seizure - I definitely do not recommend doing that, as it might not turn out well for the person rescuing. :-D Finally, I would like to mention that I often encounter people automatically associating seizures with strobes and flashing lights at concerts or in clubs - according to the Epilepsy Society, only 5% of the total 1% of epileptics in society suffer from this. Epilepsy is simply very diverse and individual, and in its own way, that’s what makes it interesting. :-)
Thank you, Krištof, for opening up about your experience with both the peer program and living with epilepsy, and we wish you all the best in your peer journey forward!
