Monday 3rd February, is World Aspergillosis Day – a day that highlights a rare condition I was diagnosed with last April. It’s something I’m still learning to navigate and come to terms with.
Aspergillosis is the name of a group of rare conditions caused by the spores from the Aspergillus fungus, which we all breathe in daily. Most people’s bodies handle it without issue, but for the small percentage who are affected (around 1% of asthma sufferers), it’s a life-changing diagnosis.
The condition causes chronic inflammation and recurrent infections, which come with significant challenges – breathing problems, chronic fatigue, difficulty maintaining a healthy weight, and the emotional strain of living with a chronic illness.
The National Aspergillosis Centre
In the UK we’re fortune to have the National Aspergillosis Centre in Manchester, a world-leading centre for diagnosing and managing aspergillosis and a place that I’m fighting to get a referral to. You can read more about the condition and the work NAC are doing HERE and check out the symptoms in case you or a loved one are at risk. Early diagnosis and treatment is key to prevent further damage to the lungs and other complications.
My Story
I shared my initial diagnosis in a journal post which you can find HERE. It’s a deeply personal account of my journey with this disease and I debated about sharing it. I wrote it to make sense of what was happening and to share with those closest to me as I wanted them to understand the impact. I’m feeling braver to share it and talk more widely about my experiences as I know I won’t be only one dealing with a life changing diagnosis or condition and it may offer some solace and support.
I wish I could say that life has got easier since diagnosis but honestly every day is a struggle. I keep trying to get back to ‘normal’, how my life was before diagnosis but it’s only recently that I’ve started to accept that my life will no longer be as I once thought it would or how I would like. I do however, feel incredibly fortune to have the support that I do and want to thank friends and family and our little yoga community who’ve stuck by me through all this. I’m truly blessed.
My diagnosis
My diagnosis of aspergillosis came after many years of struggling with fatigue, weight loss and a whole host of symptoms that I couldn’t have imagined were related. Pain in my left shoulder, difficulty lying on that side, breathlessness when I tried to exercise. And perhaps connected but unrelated, earlier diagnosis of underactive thyroid (Hashimoto’s disease), early menopause, blood blisters in my mouth (angina bullosa haemorrhagic). All autoimmune related, all needing treatment and an awareness of if I was to live a full life. Ill health has followed me around since I had Covid in 2019. There was no testing for this at that time, we weren’t in lockdown, but I was so ill with a lung infection that A&E was the place I landed to treat what I thought was an asthma attack. I had asthma since childhood but for many years it had no impact on my life to the point where I didn’t even have inhalers. My lungs never really recovered from this illness, and I now know this is probably what caused the cavities in my lungs that allowed the fungus to grow.
When a diagnosis comes, it comes with a certain amount of relief. I now know what I’m dealing with. I can find out as much as I can about it, get support and make life choices that give me a chance of recovering from it. I also now know I’m not crazy or depressed, lazy or lacking in some fundamental human ability to get on in life. For some time, I’ve felt that I was being left behind. I could only do the very basics, minimal work, keeping the household going, taking care of myself. Things like days out, going out in the evening, long day trips or even holidays. These became like hard work and I all but reduced my life to the bare minimum, telling myself I enjoyed being at home, doing less and less. I needed to hold my energy levels for the things that I absolutely needed to do, anything else felt like a luxury that I didn’t have.
Shifting Sands
Debra L. Stitt beautifully depicts in her ‘Sand Castles’ poem how a child spends all day building sand castles knowing they will return to the sea, rejoicing even when the water takes back what is rightly hers. In contrast the business man in the busy city builds in much the same way but clings tight to what he’s achieved, becoming identified with the roles he has created for himself and all that he has accumulated. As times change, the business begins to crumble to the sea, he loses all sense of who he is and cannot fathom how this could happen. I find myself in a similar place to the business man, waiting for the tide to turn on the life that I so diligently built from the ground up. Studying, training, educating myself, practicing, working and doing all that I could to make sure I could be the best that I could be at it. And now it feels like it will all be taken from me bit by bit.
Grief & Loss
The grief comes in waves, as all grief does. Rising up from the pit of my belly, piercing my heart, catching my breath. At times it completely knocks me off my feet bringing with it sadness, anger, fear, shame even. Underneath these overwhelming emotions is pure vulnerability, a rawness that is so tender and sore that most of the time I can’t go there. The feeling of loss is so vast that I wonder if it might swallow me up whole, sometimes I wish it would. The series of losses occur again and again, or I’ll realise there’s something else that is longer mine. We go through our days with so many assumptions about how our lives are and will be. We assume the sun will shine and birds will sing and take for granted the ability to live our lives as we choose. Aspergillosis has changed all that for me. I can no longer freely garden or walk in the woods, not without risks to my health. I can no longer get close to the big old oak trees that give me so much solace and support. How is it possible that this is my reality?! A question I can’t answer and it’s impossible to try.
Theres also a numbness that is trying to keep me safe. Holding back the emotions because it knows it will be too much. Like a dam holding a roaring river in place but I know the banks will break at some point and I won’t be able to hold it back forever. When I look at what these losses really mean I see a life less loved, less lived. I see fear that makes daily decisions on what I can do and where I can go. There’s an emptiness where there was once joy and pleasure and feelings of connection and belonging. I belonged to the trees, they to me. They’ve seen me through the toughest times in my life and now I can’t go there without risking infection. Understanding this is impossible. People around me can’t fathom why it’s such a big deal; ‘just wear a mask’, ‘don’t’ go when its damp’, ‘don’t spend too much time there’. It’s just not as simple as that. I can’t half connect with my trees. I can’t go there but not be fully present. It’s hard to understand and take in the implications this has for me, my mental health and long-term survival in this world.
Working Towards Acceptance
I’m working towards acceptance but being accepting of this feels like acknowledging that that is how it will always be and I’m not ready to do that even though I know that’s probably the reality. I know that acceptance will bring feelings of ease and relief and the anger may subside. Wanting things to be different is said to be the root of suffering according to the Buddhist philosophy. It’s the second of the Four Noble Truths and when desire or craving is released, happiness can be there. Sounds simple but what does it really mean for me? Accepting that I need to create a different relationship with the trees and nature, accepting that how I live in this world will be starkly different and accepting that life will be a little less from now on. I tell myself, one step at a time…
Thank you for reading! If you found this post helpful, please share it with others who might benefit. Feel free to leave a comment or reach out to me directly.
About the Author
Louise Neicho is a dedicated yoga and mindfulness teacher based in Hertfordshire, UK. With a deep connection to nature, she weaves ancient wisdom and modern practices into her teachings, writings, and research. Follow her journey and stay connected:
Website: Woodland Yoga
Email: louise@woodlandyoga.co.uk
Instagram: @louwoodlandyoga