A carefully planned adventure
In the summer of 2023, my daughter and I went on a trip. It was our first big adventure on our own since Long Covid had redefined my life. Every detail was planned around my fragile energy: our sleeping places, the pace of our days, how often I’d need to stop and rest.
At first, I was terrified. What if I couldn’t keep up? What if I relapsed far from home? What if this attempt to enjoy life turned into yet another setback?
The return of joy
But as the days unfolded, something unexpected happened. Because we honored my limits, I began to relax into the trip. I found myself laughing again, joining in small adventures. Slowly, joy started seeping back in—not the exhausting joy of pushing through, but the quiet joy of simply being. And with that joy came a different kind of energy, one I hadn’t felt in years. After years of suffering, that brightness felt almost too much to hold. Even though this is described as the natural state of the soul in the Vedic texts, known as sat-chit-ananda (being, consciousness, bliss).
When everything crashed down
Then near the end of our trip, it all came crashing down. Someone close to me disregarded my boundaries, pulling on my energy reserves until they snapped. The relapse hit hard. Romania became the place where my body gave out. After all the effort I had put into my healing, the steps I had taken, it all started to tremble.
Our return journey to the Netherlands turned into a nightmare of exhaustion, brain fog, and panic attacks as I lost my ability to think clearly. Even though I had taken all precautions necessary, I felt enormous guilt toward my daughter. She didn’t deserve her holiday to end like this. At one point we even came close to being removed from a station by German police—there was no space for me to rest, no one to guide us, and my overwhelmed mind couldn’t find a way forward as Long Covid was handled as a joke by the police.
Breaking point at home
Months later, the same person who had shaken up our holiday took legal action against me. The lawyer I trusted to help us out dismissed my limits completely. The stress pushed my body past breaking point again. Symptoms increased and I developed new ones and on top of that I fainted. When I woke, I had a concussion as I smashed my head into the doorframe. Again I felt so sad for my daughter, who had to witness this.
What followed were three more months of forced rest on top of Long Covid and physical pain in my shoulder, neck, and arm that lingers to this day. The new symptoms had layered themselves onto the old ones. It felt as if all my efforts—the careful steps I had taken to rebuild my health—were flushed down the drain in that single moment of losing consciousness.
The deeper wound of judgment
But perhaps the deepest wound wasn’t physical. It was emotional. The fear of being judged by others who might catch a glimpse of me smiling in the sun, sipping coffee in a café, or laughing with my daughter. The fear to hear these words again: “See? She’s not sick at all.”
What they don’t see is the reality of life at home. Fun moments are rare because all my energy goes into living a holistically healthy life, caring for my daughter, and keeping up with basic chores. Emails and necessary appointments often wait six months or more for a response. Some never take place at all within that timeframe, because with something that looks similar to the symptoms people experience after a brain injury, one of the hardest things is to keep up with social contacts and administration.
Why joy still matters
I’ve been following the ten principles of Radical Remission for years now, a holistic approach to recovery researched by Dr. Kelly Turner. One of those principles is increasing positive emotions—like joy. That’s what makes joy so precious to me. Although joy can never be constant, it feels sacred when it appears. I know I need laughter and joy not only to cope with my illness, I also need it in my healing journey, wherever that leads to.
I’ve learned I need joy to keep the balance within all the struggles, to stay alive. Without joy, my life becomes heavy, dark, and suffocating, which creates a downward spiral. Joy is what keeps my spirit from collapsing under the weight of pain and setbacks Long Covid imposes on me and a society that often acts blind when it comes to Long Covid. Even when I mention specifically what I can and can’t do, people have a hard time believing me and often disrespect my boundaries. Those people don’t see the struggle I live in daily and how hard it is to follow only a few of my doctor’s instructions. It’s so fragile that I have to give in on cooking, eating, or a daily moment outside when I’m approached with disrespect of the boundaries that are necessary to keep myself standing.
Joy is not a cure, it’s humanity
My joy often gets mistaken as being healthy again. Yet, it doesn’t mean I’m cured—it means I’m human. It means I’m fighting to hold on to the parts of life that make it worth living.
My boundaries felt selfish for a long time. For me they are a sacred act of self-preservation and of giving my daughter the best mom that I can be, given the situation. My boundaries are the fences that protect my sparse energy. They protect me from spending all my energy on survival alone and create small moments of laughter and joy.
Living without adjustments that respect boundaries feels like a cancer patient denying their therapy. Yet for cancer there are treatments and doctors for support. For Long Covid there are only guidelines—no cures, no therapy, and no doctors who try to heal you. On top of a debilitating illness I have to figure out everything by myself by trial and error. Not to speak about the costs no insurance covers and unclaimable when filing taxes.
There are things I have accepted, things I cannot change. Yet being judged and disrespected in my boundaries makes this already almost impossible journey heavier than it needs to be. My nervous system gets overwhelmed as I need to advocate for my health constantly. It makes me feel unsafe.
A note to you
To anyone reading this who feels afraid to live because of what others might think, and the ones who live in a constant battle:
✨ Your healing is not for their approval. It’s for you. For your children. For the quiet mornings and laughter yet to come. For the joy in life that is still waiting for you—no matter how small or rare it may feel today.
💛 “I am worthy of joy. I am joy.”
