In our daily lives, we are faced with many little problems. Everyday challenges: we stand in front of the mirror and ask ourselves what to dress, we complain about learning stress, our housemates lack of cleaning, or that we once again were not able to have enough money left at the end of the month.
But what we often do not appreciate enough is something way more important – our health. And unfortunately this is not granted to every one of us. The lives of people who are, for some reason, not in a healthy state face much bigger challenges – how to live your everyday life with a disease – not a flu or a cold but rather one that restricts you permanently. Outwardly, you sometimes cannot even tell if a person is sick. But those people are out there. Maybe it is your friendly neighbour or the funny guy from your student’s association. One of them is at my university. A beautiful, open-minded, and Disney-loving girl: Nadine. For a long time I did not even know that she suffers from PNES – a psychological form of epilepsy.
Even though it is estimated that 20-30 percent of patients at epilepsy centres are diagnosed with PNES, the disease is relatively unexplored as it is triggered by psychological problems. How this is possible, no one can really explain yet. That is why there is no specific prescribed medication or treatment to get healthy. When Nadine had her first seizure and later obtained the diagnosis of PNES, it would have been easy to bury her head in the sand. But she did not do so. Instead, she tried to develop methods to feel better, find others with the same condition, and finally flew to New York to take part in a PNES conference. Apart from that, she started to write a blog about her life with PNES, which is read worldwide by PNES patients, their families, and friends. And there is much more to come in her life.
I interviewed Nadine in regards to how she deals with PNES in her daily routine.
- When did you have an epileptic seizure for the first time?
The 2nd of February, 2011 says my boyfriend. I myself cannot remember it in this much detail.
- How did it feel when you were diagnosed with PNES?
It felt like a huge relief. The time from my very first seizure until the diagnosis was a long, exhausting, and disappointing journey. When I got my first seizure, I had to go to a neurologist. But when a brain scan showed that everything was healthy with my brain, I was sent home. To be honest, you feel desperate and alone. It seems that there is no one in the world that knows what is wrong with your body. And you cannot trust in your own body anymore with 4 to 5 seizures a day.
- What did you do to feel better?
It actually took me a very long time to feel a bit better after the diagnosis. According to psychologists and neurologists the very first step of recovering is actually accepting your condition. However, this is easier said than done. It took me a long time to actually understand that the problem with my body was not neurological but psychological. If it were already so hard for me, family and friends would even struggle more with it.
In May 2014, I got the idea to start a blog about PNES, after doing some research on my own and experiencing that the epileptic clinic that diagnosed me actually did not know much more than the diagnosis itself. I decided it was time for a change and found out about the PNES conference in New York. I decided to go there and as soon as this decision was made, I decided to start writing a blog for people and caregivers with the same condition.
- How does the worldwide network with others who have PNES help you?
It can help so much to actually be able to talk to someone who experiences the same, especially on days on which you have a seizure, and you feel like as if a truck hit you because your muscles are so sour and bruised. It is such a relief to explain this to someone who also experiences this than to someone who does not. Of course, completely understandable.
- What do you think of activities like the Ice Bucket Challenge? Do you think that they can help people affected by a disease?
I think these initiatives can make a difference indeed but the danger with it is that, as so many things on the Internet, it is hype and, therefore, will not last forever. On the contrary, these ‘hypes’ are really good to actually raise awareness for certain conditions which I think is absolutely necessary and therefore really great!
- How is your life different from that of your fellow students? How do you try to bring normality in your daily routine?
In one word: Arranging.
Everything in my life has to be arranged. Other students seem to have a ton of energy and I have to arrange every part of my energy every day. Do I want to go to sports? Or should I rest? Can I go to that birthday or am I too tired? Do I want to party? Then the day before and after are fully dedicated to resting because when I am tired I can risk getting a seizure. And getting a seizure means 5-7 days of full resting.
Ever heard of the Spoon theory? It describes the life of a woman with a chronicle disease who tries to explain to her friend what it is for her to live with this disease. It’s brilliantly described and so true.
- How do you stay positive on bad days?
Distraction. Getting off that couch and going for a nice walk outside, visiting an animal park, going to the movies, inviting some friends over. When I just had a seizure all I wanted to do is sleep, but, to be honest, I don’t get much happier from it. Therefore I try to go for very short walks, and if I have more energy, do an activity. And in my worst days, I luckily have a sweet family and friends that motivate me to go for these short walks. I think this is very important, because if you just stay inside there is the danger that you will get stuck in a vicious circle of being tired and lying on the couch. For me, breaking through this circle gave me an energy boost and with that my mood also improved.
- What would be your advice to others who receive a diagnosis for a serious disease?
Accept your condition, how hard that may be. I think this is the very first step in learning how to live with it. As soon as this is working for you, you might also want to turn it in something positive (as it is already negative).
- What are your plans for the future?
I am leaving to New York in 6 weeks to do an internship at the Epilepsy Free Foundation and organise the second conference for PNES patients. I am determined to improve the connection between psychology and the medical field because I believe that there can be a lot gained from this change. Certainly in a world where more and more people (especially youngsters) have to deal with psychological conditions caused by pressure and stress due to modern life.
This example of Nadine could hopefully encourage others diagnosed with a disease – and their family and friends – not only view a diagnosis as something other than negative but try to accept it and make the best out of it. Especially important is to remind yourself that you are not alone with your disease. Make use of the social networks, talk with others about your experiences, and think about the motto Nadine shares: If life gives you lemons, make lemonade.
Click here to read Nadine’s blog.