“Today I want to share my story, so that others who might feel the same way feel less alone. I am here to share my story to tell you there is nothing wrong with you, you are not just making it up in your mind. I am here to share my story because some people are more sensitive and do feel things that may be considered as not normal by a doctor. I am here to share it because I want to share what a gift it can be to break down. I am here to share because people with chronic disease deserve a voice and maybe today, I am the voice for all of us.
I also want to emphasize there are so many different chronic diseases, and even when you have the same diagnosis as someone, often you experience it a little different. We are unique in all ways, including how we experience any given disease. But I found a lot of comfort in talking to people with similar symptoms. To be seen and understood is one of the most healing things I have ever experienced. I hope I can make you feel seen and loved a little bit more when you read this.
Till I was diagnosed with chronic Epstein-Barr Virus Infection, it took me 4 years of seeing multiple doctors. It all started when I was in London at 19 years old. Weird symptoms, flu like. After starting university to study psychology, a new job and exercising every day for 1.5-2.5 hours in autumn 2016, my body started to show symptoms I never experienced before. Feverish. Fatigue. Muscle pain, which I could differ very well from muscle soreness after a workout. Brain fog which made it very hard to concentrate. Intense fatigue. My doctor told me it was a normal flu.
But in December 2016, I did a blood test which showed I had an Epstein-Barr Virus infection also called Mononucleosis or Glandular Fever. ‘There is nothing you could do against it, just wait,’ they said. Unfortunately, I was in an unhealthy mental state where I tried not to feel too much, so I numbed myself with being so busy I was not able to think about how I felt. I did not rest and give my body the time to heal. Because I had good weeks and days without pain and fatigue, I thought it is over every single time. But my health state did get worse, and I went to see another doctor who told me (it was 3 months after I was diagnosed with mononucleosis) that it was not possible it was still active. I got iron supplements and a B12 shot for my low energy and fatigue.
As you can guess, it worked only for a short period of time. My symptoms did not disappear. ‘It is all in your mind,’ was the next diagnosis I got. Over the next months, I went to see a sport psychologist, an energy worker, cardiologist, another psychologist, run back to my doctor over and over again to tell him I am still not better. I had to take a break from university because studying 5 minutes felt like 10 hours. I left many jobs and the worst I heard from a boss was, ‘You are so egoistic for leaving. And by the way, I am 50 and I am showing up every day. You are young, you should have the energy to do more.’
It is hard to deal with a condition no one truly sees when you are the only one feeling it. It is not easy to live a life with chronic pain, but way worse are the people who do not understand you are not just pretending. My symptoms came and went in waves, so I had good weeks and then a few bad weeks. I was still excessively doing sports. I think it was a way of suppressing but also releasing my emotions. A way of coming back into my body which hurt so often. The rush of endorphins and the kickboxing community was like a drug to me.
In the beginning of 2019, I restarted university again to finish my bachelor’s degree and started taking a course to become a fitness instructor. Yes, I can hear what you thinking: ‘How was she still able to do so much?’ I asked myself this question so many times and I think it was my strong mind. I just kept going because I did not know better. I did not know to listen to my symptoms because everyone around me told me they were not valid. So, I ignored them as much as I could.
I know today I acted in the best way I knew; we all have coping mechanisms to stay alive in a world that is so fast-paced. I went to see a rheumatologist who told me, ‘If you are still able to kickbox, it can’t be that bad.’ I felt so unseen and misunderstood. I had a very hard time even explaining my symptoms to people. I even hid my symptoms from friends, family. I did not want to be a burden. I kept going so strongly. It was not until the end of 2019 when I met a friend who told me mononucleosis can be chronic. I started to read more about it. I felt for the first time seen in what I possibly have. I also read books about how I can heal my body through diet in a holistic way. I stopped working out because I just could not do it anymore. My body was hurting more.
It did not get much better, so I went to see another doctor. ‘Let’s give it another shot,’ I thought. He told me the Epstein-Barr Virus is still highly active in my body. I started to work with an acupuncturist and naturopath. She made me feel so understood. She told me about how much more common it is to have this virus being active for longer than just a few months. If I could tell my younger self one thing, it would be to not believe so blindly what some doctors say. Your symptoms are valid. You deserve to have help. And you can ALWAYS support your body and immune system even when there is no so-called cure. The earlier you support it, the better.
I wrote my bachelor’s thesis in spring 2020 and received the best mark for it. I wrote this thesis whenever I felt good enough. I am telling you this because I want you to know: whatever you set your mind to you can achieve, no matter what circumstances you are in! You are so strong! But also consider your healing should always come first. You only have one body. A degree is always waiting for you to finish next. If I could go back, I would have stopped doing so much earlier. Healing is happening in the state of being, especially in a parasympathetic state.
In August 2020 everything changed, again. After a hike – I went because I felt a high in energy which I did not feel for so many months – my system collapsed like never before. Since then, till this day, I am experiencing pain most days. To me, it was the moment where my body could not hold it together anymore. I did not start my master’s degree. All I knew was, ‘It is time to listen.’ Time to listen to what my body has to tell me. Our society sadly sees such breaks as bad, as failure. That’s why I and many others struggle(d) with guilt when doing so. To me, it is the ultimate gift you could give to yourself. Take time off to listen, to heal, and start learning what matters most to you. You deserve it; you deserve to rest, breathe, and start new.
I am a very strong-minded person. I see the good in the darkest corners of life. But in October 2020, I could not hold myself anymore mentally. I was so frustrated. Sad. Angry. Lost. Desperate. How is it possible to feel so sick at 23 years old? Why is there no cure to this? Why did no one tell me before that I can support my immune system in so many different ways? Why did I myself not do more research? Why did I blindly trust the doctors?
Soon, I started therapy. Luckily, this time I found a therapist which resonated deeply with me and my values. I feel so seen by her. Please take your time to find someone with whom you feel safe; that is so important when you want to go deep into your subconsciousness, into your darkest corners and wounds. The work I am doing with her helps me not only to go through the hardest time in my life, but also gives me the chance to change my life. Why, you ask? Because I learn about my deepest fears and turn them into my strengths. I learn to feel where I need to put stronger boundaries. I learn to speak my truth and live by it, no matter what others think of me. I learn to trust my intuition. I learn to make myself feel safe. I learn to forgive myself for all that I did, in the best way I knew at that point in life. Forgiving myself and others, to set myself free.
A disease to me is a manifestation of too many stressors. One of my newest doctors thinks I deal with central sensitivity syndrome, which means my neurons recognize pain stressors quicker and more intense. So, to me, things that might not be painful to others are triggering a lot of pain for me because my brain is more prone to it. I will not go into depth here, but I am a highly sensitive person. I experienced atmospheric trauma. I was overwhelmed and stressed easily. I got sick often as soon as I had too much stress or did excessive exercising. Being a perfectionist and a people pleaser left me doing things I would not do anymore. I could not hold strong boundaries. I experienced sexual abuse. Unresolved childhood trauma. To me, the EBV infection was the last drop to bring the stress bucket to overflow. WHAT A GIFT. Finally, I reached a point where I could not look away anymore. Symptoms are a way for our body to communicate with us. Listen. Support. Heal. Repeat.
How does it impact my life? So much that it turned my whole world upside down. I often have to say, ‘I am sorry, I can’t make it’ because my energy level is low or I am experiencing too much pain. Exchanging energy with others is exhausting, so I limit to the people I love the most. Writing this takes a lot of concentration and energy, but it also brings me joy. Balance is what I am implementing most. When planning my week, I always calculate how much energy it will potentially take, so I have enough breaks between events. Stress in any form, physically and psychologically, triggers symptoms. So I try to reduce stressful events. My exercise routine changed, some days I don’t move. Some days I rebound on my trampoline or go for a walk (Go into nature more often, it is one of the most healing tools I have ever found. Sunshine. Fresh air. Rain. Forest. Animals).
I live a slow-paced life – which to me truly is a gift. I do not want it to get fast again. The whole thing took me on a journey back home to myself. Back to the soul expression, I was always meant to be before everyone told me how I should live my life. It is a brave journey you take on when you decide to fully start healing. You do all the things society tells you not to do. In a world that rewards hustling over wellbeing, it is a revolution to say yes to your own body and health. I am very privileged to have the opportunity to stay safely at home, and take my time to heal and rest. I have the opportunity to be supported by different therapists. To have these helper’s in my life after such a long time fighting alone is such a relief.
What I had to learn is healing is always more than just taking some medication. It is about changing your way of living because the old way was linked to you falling sick. I am actually now very grateful there was not just a shot I could take to make it go away. Yes, sounds weird, but I am currently learning more about life than any school could have ever taught me. Learning to be patient and compassionate with myself on this journey. I learned how to support my immune system/body holistically, I learned the water quality we drink matters and the food we put into our system is defining our health state a lot. There is no diet who fits all, but one thing I can say is the more fruits and veggies I eat the better. The more living water I drink the better. Your stomach and colon are your second brain; start healing them and you will thank me later.
The liver, spleen, and kidneys are beyond measure of importance to my healing, so I support them with as much love as I can. What often gets forgotten is your nervous system stores everything you went through. And what I had to learn the hard way is this…stressing over wrong decisions, like eating a food that is not the best for your healing, is way worse to your nervous system than eating this food itself! Don’t worry, be happy may not be the right thing to say because being sad and feeling other heavy emotions is essential to healing – feel to heal. But worrying less about all that you potentially are doing wrong is pure love to your system. There are different ways of healing your nervous system; find the way that works best for you. What helps me a lot is meditating, acupuncture, calming herb teas, good sleep, walks in nature, cold exposure, sunbathing, releasing old or stored emotions, crying, and grounding (putting your naked feet on grass, sand, etc.). Learning to embrace all of me. Healing not only myself but my ancestor line by doing this work is beyond anything I have ever done. You still with me? You are a warrior, still being here, taking it day by day, seeing the light at the end of the tunnel even in the darkest times.
So yes, to me this disease is my biggest gift I have ever received because it helps me look closer at how I was living. It helps me start putting myself first. It is the biggest teacher. What it taught me to this day? Many things, but what I want you all to know is: your life is yours. Live it the way you want! You deserve it! Living in your truth and soul alignment will always bring you to where you are meant to. Doing what makes you happy will always be medicine. Surround yourself with the people who feel like sunshine. Communicate clearly what you want and need; this is not cocky, but essential. Unspoken needs are never met. Love yourself a little harder because you are doing so great. You are always acting in the best way you know, so if you know better, act better. Your body loves you; it always fights for you and not against you. You are perfect. You are so loved. You are so supported. You are brave. You are strong. You are exactly where you need to be. You are enough and never too much.”
This story was submitted to Love What Matters by Yara Leana of Switzerland. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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