How to talk to friends and family about aspergillosis

It can be hard to talk to friends and family about aspergillosis. As a rare disease, few people know about it, and some of the medical terms can be quite confusing. If you’ve been recently diagnosed, you might still be getting to grips with the disease for yourself, and learning about how it will affect your life. You might also run into preconceptions or assumptions about fungal disease that aren’t particularly helpful

All in all, these are tricky waters to navigate, so here are some things to consider before talking to someone about aspergillosis for the first time:

• Get to grips with aspergillosis yourself first. Particularly if you’ve recently been diagnosed.

You might not ever know all the answers, but having an understanding of your type, your treatment and what aspergillosis means for you will help.

• Pick a good time and place. Being able to talk one-to-one, in a place where you won’t be interrupted, is a good first step.

It’s also a good idea to choose a time when neither of you will have to rush off. Pop the kettle on and settle in.

• Be patient. Your loved one or friend probably won’t have heard of aspergillosis before, and might struggle with the different medical words, so give them time to digest what you have told them and ask questions if they need to.

Try not to get frustrated if they don’t react in the way that you’d hoped. They might be very sad, when what you need right now is someone to be strong. Or they might brush it off or make light of it, when you want them to understand that aspergillosis is a serious disease. Often people need time to go away and think before coming back with offers of support, or with more questions – let them know that that’s ok.

• Be open and honest. Talking to someone you care for about the disease is not easy, but it’s important that you explain how aspergillosis is likely to affect you. You might feel tempted to downplay things, but being honest can help in managing your friend or family member’s expectations in the future.

Some people find the Spoon Theory helpful in explaining chronic illness. In short, spoons represent the energy needed to get daily tasks (getting dressed, showering, washing up etc.) done. People without chronic illness have an unlimited number of spoons each day. But people with a disease like aspergillosis only get, say, 10 spoons on a ‘good’ day. Using this example can help to explain how living with aspergillosis affects all areas of life.

• Let them in. If you are talking to someone close to you, inviting them to learn more or share some of your experiences can be very helpful. You might want to invite them to come to an appointment with you, or visit a local support meeting.

If they want to learn more, or ask questions you don’t know the answer to, useful resources are available online. For example, did you know that we have a Facebook group just for family, friends and carers of people with aspergillosis? Lots of pages on this website can also be very helpful, so feel free to pass on the link (https://aspergillosis.org/).

• Be yourself – you are not your disease. There is so much more to you than aspergillosis, and your friends and family should know that too. But talking about it could mean that you get a little bit more support or understanding from those closest to you, which is never a bad thing.