Coping with aspergillosis: one patient’s experience

What is it like to discover that Aspergillus is affecting your airways? This patient shares how an aspergillosis diagnosis changed his health, work and sense of independence—and what helped him find a way forward.

Coming to terms with aspergillosis

When I was told I had aspergillosis, my consultant insisted that I sit down and brace myself first. That was disconcerting, to say the least. I thought he was about to tell me I had cancer or another life-ending illness. In some ways, he was right: aspergillosis can be life-threatening, and it can certainly change your life.

For the first year or so, my life did not change very much. I continued to work, perform music and do the things I had always done. My medicines changed, and parts of my daily routine changed with them, but I felt I was coping. I was in and out of hospital, but hospitals had already been part of my life, alongside clinics, veterinary surgeries and even shamans’ caves. I thought of aspergillosis as another lung condition I would have to adapt to, and at first I did not understand how much it might affect me.

As time went on, I became more aware of the illness. My health declined quickly, I was taking more medicines, and eventually I could no longer do my job. In 2008, when I was about 50, I retired on medical grounds. I felt as if I had been put on the scrap heap.

Losing work and confidence

Being at home every day while my wife went to work affected me deeply. I was no longer the breadwinner. I had lost my career, my prospects and, for a while, my hope for the future. I became depressed.

At the same time, I was dealing with side effects from the medicines I was taking. I felt bored, tired, nauseated and weak, and I struggled with insomnia. I gained weight and lost interest in the things around me. I felt alone, useless and ill. My pride, ambition and independence seemed to drain away.

I did not know anyone else with aspergillosis, and I had no one to ask for reassurance or advice. I had suicidal thoughts and began taking dangerous risks. My consultant recognised how low I had become and referred me to a psychiatrist and a counsellor. Those first attempts to get help did not reach me, and I sank further into depression and self-pity—feelings I had never experienced before.

If this part of the story feels familiar, please tell someone and seek support. In the UK, call NHS 111 and select the mental health option for urgent help. If you or someone else is in immediate danger, call 999 or go to A&E. You can call Samaritans free, any time, on 116 123. If you are outside the UK, contact your local urgent mental health service or emergency number.

Finding a way forward

It took me about two years to come to terms with my condition and what the future might look like. Several things helped me get some of my life and interests back. My family kept rallying around me with love and support, and friends tried to understand how my health was changing.

I began to look at each day differently and found new hobbies. I had to sell my large, powerful motorcycle, so I bought a boat that the whole family could enjoy. I know what you might be thinking: I could simply slip overboard during a bout of depression. I won’t—I have never liked cold water, with or without soap!

I no longer sing, dance or perform on stage, but I have taken up writing and still play a musical instrument occasionally.

Finding the online Aspergillus community was important. It showed me that I was not alone and that there were many other people living with this illness. Information and support from the website helped me understand more. My consultants and GP learned about my situation too, and were able to offer treatments and advice that suited me. After a very difficult time, I began to adapt, both mentally and physically.

Researching the illness helped me make sense of some of what I was experiencing. At the time, I felt that tiredness, weakness, low mood and feeling constantly unwell could be connected with the medicines as well as the illness. Understanding that helped me plan my days around what I could manage. Everyone’s experience of illness and treatment is different, so concerns about symptoms or side effects are best discussed with your own healthcare team.

Four years after losing my job, my independence and much of my confidence, I could face the world and the future again—though not always willingly. I know more about my limitations, even if I sometimes refuse to surrender to them. I have some sense of where I am going in the universe, I think!

If you are new to aspergillosis, the situation may feel frightening and overwhelming at first. For me, it took time before life began to feel warmer and more familiar again. I have learned to live with my fungal lodger and the baggage that comes with him. It was not easy, but life goes on, so live it as fully as you can.