Yep, you read that right!
After years of testing, invasive procedures and many almost…but not quite conclusions, we finally got to the crux of my health issues. I’m mouldy. Specifically, mycotoxins produced by Aspergillus and Penicillium were detected via urine testing.
From debilitating fatigue and massive weight gain, to round-the-clock reflux, hair loss and difficulty breathing, my list of bizarre symptoms is too long to share. But you can learn about the common signs and symptoms of mould-related illness here.
The experience has been arduous and I can’t say I’m grateful. But, like all challenging experiences, I’ve learned a lot along the way. I’ve learned more than I ever wanted to know about species of mould and the debilitating effects on the human body. I’ve learned, first hand, about medical gaslighting and the inadequacies of our healthcare system. But most importantly, I’ve learned about the process of healing, the power of intuition and about how I respond when things get tough.
Here are 5 lessons chronic illness has taught me:
1. Don’t underestimate the power of your intuition
Doctors told me to lose weight; avoid spicy foods and, my favourite, “you’re too young for that [condition]”. I’ve been prescribed medication for asthma, reflux, heavy periods and depression; one GP even asked if I’d be interested in Ozempic injections for weight loss.
As the months went by, my stockpile of prescription medication grew, as did my feelings of frustration. My doctors persisted in treating individual symptoms but part of me knew they were missing the mark. Fuelled by frustration and rage I broke down in front of my GP, insisting that she treat me as a whole person rather than a collection of ailing body parts.
It didn’t go down well…
To her credit, the GP called me later to apologise. She acknowledged my frustration and made an effort to look at my symptoms holistically. Unfortunately, our medical system is antiquated and underfunded; it simply isn’t designed to prevent, treat or manage the chronic conditions which plague modern society.
What can you do?
Trust your intuition and be ready to advocate for yourself:
- Keep a record of your symptoms so you can provide as much information as possible.
- Request copies of all test results.
- Book a longer appointment, if possible.
- Come prepared with a list of questions and concerns.
- Don’t be afraid to say no or ask about alternative treatment options.
- If a doctor refuses your request for particular tests, ask for that decision to be noted on your clinical record.
Finally, if you feel you’re not being heard, or that your concerns aren’t being taken seriously, consider finding another doctor or seeking a second opinion.
2. Give yourself permission to retreat
Diagnosis and healing take time.
As I shared over here, mould-related illness is often overlooked by medical practitioners. It took me roughly two and a half years to get diagnosed and I’m now midway through the treatment process. Seven months down and (fingers crossed) 4 to go.
Complex, chronic conditions – including mental health concerns – can take time to identify. You may be put on waiting lists. You may have to wait…. and wait…. and wait…. for results. You may be misdiagnosed like I was. You may feel like you’re spinning your wheels, getting nowhere. It’s frustrating, right!?
And, even when you receive a diagnosis, healing isn’t always linear. You know the drill: 2 steps forward, 1 step back and a little to the left.
Whenever animals in the forest are wounded, they rest. They look for a very quiet place and just stay there without moving for many days. They know it’s the best way for their body to heal. During this time they may not even eat or drink. The wisdom of stopping and healing is still alive in animals, but we human beings have lost the capacity to rest.
– Thich Nhat Hanh
Give yourself permission to retreat.
Whether you take a step back from the online world, choose to socialise less, or negotiate a change in hours at work, grant yourself the time and space to deal with the complexity and stress of everything that’s going on.
3. Learn to ride the emotional waves
Chronic illness brings up a whole host of emotions and, sometimes, you have to coexist with seemingly opposing emotions. My diagnosis, for example, brought waves of grief and relief.
I say coexist, rather than juggle or manage because, as my psychologist regularly reminds me, emotions are not inherently good or bad. They just are and, if you stop fighting them, you’ll have a much easier ride. If, instead of resisting, you give yourself time, space and grace to feel your feelings, powerful emotions will eventually dissipate or morph into something else. It’s not easy. But it’s easier than being caught in the riptide of emotions; replaying, judging and analysing until you’re inevitably dragged under.
4. Sometimes, the most effective self care is also the least appealing
Spa days and pedicures are lovely but they may not be the best use of your time, money and energy…. especially if you’re living with chronic illness.
Self care encompasses all of the activities that enhance your physical, mental, emotional, social, and spiritual health. And, sometimes, the actions that have the most impact, may not be the most obvious, the easiest or even the most appealing.
I’m talking about gritty self care.
For me, mould remediation fell into this category. We ripped up carpet, cleaned like demons and made countless trips to the dump. Two weeks, 12 hours a day. We were absolutely exhausted but we worked hard to create an environment that was safe for me to live in and that wouldn’t undermine my efforts to detox and regain my health.
I share this experience with you to draw attention to the fact that self care is broader than you think and, sometimes, it’s going to take grit.
5. Healing hides in unexpected places
Having spent a decade working in the arts and cultural sector, I knew about the therapeutic benefits of art. But, at some point, I forgot that these benefits applied to me; I stopped going to galleries, I gave away my art supplies and my creativity calcified.
Depressed and unable to work full time because of debilitating fatigue, I started to explore activities that didn’t require a lot of mental or physical effort. For months I sat, filling page after page with colour-drenched floral designs. There was something deeply meditative about drawing repetitive shapes and patterns. And, of course, there was joy.
My creative play has expanded into a more conscious exploration of my inner world and, through the creative process I’ve been able to process my emotions and release the toxic sludge that poisoned me from the inside out.
I share some of my creative play over on Instagram. Come and join me!