Long history of juvenile rheumatism, fibromyalgia and ME/CFS; currently only meet the diagnostic criteria of asthma.
More than 10 years.
What is the most common misunderstanding about you or your condition?
Most people think that chronic fatigue is the same as constantly being tired. But it’s so much more than that. It’s a kind of exhaustion that affects your entire physical, mental and emotional functioning, and doesn’t improve after a good night’s sleep or a day of resting. Also, normal tiredness after working hard or working out can feel quite satisfying, making you feel dozy and sleepy. Chronic fatigue feels more like when you have a bad flu: you can barely lift your head from the pillow and even if you lie completely still, you still feel almost nauseated with exhaustion.
I was diagnosed with juvenile rheumatism, fibromyalgia and ME/CFS when I was just a teenager. For more than 8 years, I visited doctor after doctor trying to get better, or at least improve my overall functioning. The little energy I had, went towards working on my recovery. After all that time, I had enough – I wanted to learn how to live my best life with and despite of my health problems. But during the early 00’s, there was so little information available about how to get things done with chronic illness. I wish I could have learned sooner – from books, the Internet or patient supports groups rather than trial-and-error on my own – how to manage and overcome the physical, psychological and practical problems of living with chronic illness. Because, even though it’s much more challenging, I believe you can still build a meaningful life despite your chronic pain.
Thankfully, it’s been so long ago since I visited (new) doctors on a regular basis that I’ve forgotten (or blocked out?) the ridiculous or dismissive things said to me! But deep down, whenever I’m sitting across a medical professional, I still worry they won’t believe my story or symptoms, or think I’m just being overly sensitive. So I guess that says enough about my past experiences…
This will probably sound weird, but when I was housebound as a teenager, movies and books with kick-ass heroines really pulled me through. To me, living with a chronic illness felt a lot like starring in an action movie. You’re faced with seemingly impossible challenges and everyday living can seem like a quest, demanding extraordinary willpower to complete simple tasks and to achieve your goals. To this day, seeing other girls and women fighting those (fictional) battles, even if it’s just on screen, inspires and motivates me to keep going.
Tell us a funny story about an encounter, an episode, a flare up, or a moment where nothing went to plan…but the story is a good one to tell!
When I was 15 and mostly housebound, one weekend I felt good enough to join a group of friends to go the cinema. However, after sitting down for two hours, my joints has gotten so stiff that I could barely walk. And the last train home was about to leave… One friend then borrowed a shopping cart, put me in there and raced to the train station. Just in time! Looking back, I’ve been carried and pushed through many cities around the world whenever my body suddenly gave out on me 🙂
For as long as I can remember, my mom has suffered from similar health conditions. Without complaining, without falling short of her family. Seeing her strength every day has subconsciously founded my own resilience.
In my late twenties, after years of no treatments, I wanted to work on my recovery again. My biggest wish was to become a mom, and the medications I was taking at the time were not safe to use during pregnancy. So I decided to create my own action plan for recovery, based on two main principles: 1) I didn’t focus on fully healing, but determined a few concrete health goals that would improve my quality of life the most, e.g. being able to walk a mile each day. 2) Recovery wouldn’t be the only to-do in my life anymore, but something I could incorporate in my daily routines. So I chose simple, doable actions, not complicated treatments or expensive supplements. Over time, things like improved sleep, eating veggies with every meal and walk training added up, and started to snowball in a positive way. What works for you, depends so much on your situation: the disease you have, the root cause(s), how long you’ve been ill, your personal circumstances. Alternative therapies can definitely support your health, but don’t overlook the simple and somewhat boring things like real rest and being in nature.
The fact that I was diagnosed with a chronic condition, not something that would go away anytime soon. I was only 15 at the time, and had a hard time accepting that my health would impact so much of my life. The loneliness of being stuck at home while your friends’ lives go on, with few people who really get what you’re going through, really hurt too.
Right now, I no longer meet the diagnostic criteria for any disease (besides asthma), but being ill for over 15 years has clearly left its marks on my body. Compared to other women my age, there are still plenty of things I cannot do. But pacing my activities and coping with mild symptoms has become such a part of my routines, most of it happens on auto-pilot. On days that I feel well enough, I cycle the kids to school on my e-bike. Although I rarely feel like doing it, being outside in the morning has a major impact on my energy levels, mood, mental focus and sleep. I work from home, on my own pace, part-time. When my youngest is home, we come up with ways for him to unleash his energy without spending all of mine. I try to make healthy meals each day, with lots of vegetables and little gluten for me. At night, I start to unwind two hours before bedtime, or I won’t be able to fall asleep. There are countless of these little things I do all day long to feel as good as possible, but it doesn’t feel like a chore any more.
Too much to capture in one paragraph! But what comes to mind are two things: To be kind and always look for the underlying need of peoples behavior, because so many of us are struggling with problems you can’t see from the outside. And when it comes to accepting your illness: facing today’s reality doesn’t mean you give up hope for tomorrow. It just means you make the best of the given situation in this moment, instead of forcefully trying to change something that cannot be changed right now.
What is the one thing you are MOST proud of yourself for achieving despite your illness?
Finishing high school and getting my university degree in Psychology all through independent studying from home!
Exposing yourself to sunlight in the early morning actually triggers a cascade of psychological reactions that boost your focus and productivity levels. A short stroll has the added benefits of movement and fresh air, but drinking your tea outdoors or sitting by the open window for a few minutes also helps. I also love lists; both to unburden my mind – less to remember! – and to plan my day, energy-wise. If possible, I do high-focus tasks during the time of day when my concentration is highest and save low-focus tasks for not-so optimal periods.