So just how do you tell your family & friends that you have Addison's Disease?

Letting people know that you have Addison’s disease will never be easy, but it can be helpful to think about it beforehand.

Those who are closest to you need to have accurate information about your diagnosis, your medical needs and, very importantly, the outlook: that it isn’t a condition that deteriorates and that with the right daily and emergency medication life expectancy is normal. Equally you need them to know what’s going on and how they can support you when you need or want it. There are several free-to-download publications which can be helpful with this.

When to speak
You’re in control: it’s up to you to decide who to tell and when. Bear in mind your own need for practical support as you stabilise after the diagnosis. Remember too that it’s worth preparing what to say to anyone who already knew you weren’t well before you were diagnosed and who now sees you popping your pills. Young children are more aware of things going on than we might imagine.

When there’s a family get-together or a reunion of friends coming up, you’ll be more in control if you decide in advance what you want to say and prepare for likely questions. You can also ask people to respect your privacy by keeping your information to themselves.

Telling your closest adults
As they hear your news, people could react in many different ways. You might wish for just the right mix of sympathy, matter-of-factness, support and positivity. Instead you might get anything from weeping to ‘It could be worse’, seasoned with unwanted advice and ill-informed opinion – possibly including questioning the diagnosis or leaving the room because they’re overwhelmed. For example, someone close to me was outraged that I was planning to follow medical advice rather than attempt to ‘cure’ my Addison’s with alternative approaches.

Whatever that first reaction, be prepared to give people time to digest what you said. Some people get caught up in their own thoughts and feelings first before they’re ready to listen to what’s going on with you.

Then aim for you and one or more loved ones to keep talking and to learn all you can about Addison’s disease together – first all the medical know-how that you can take in and then how it applies to you.

Telling your children
Whatever their age, do let your children know about your diagnosis sooner rather than later. Obviously keep things age appropriate, but let all under-18s know that

  • it’s not their fault
  • it’s not contagious
  • it’s not a condition that deteriorates but it does sometimes require urgent action.

For older children, when they’re ready, you can let them know how they could help in an emergency, according to their age and maturity. Be prepared for questions!

Your needs
There are facts to put across, but there are also your own emotional needs and wishes. When you’re getting ready to speak with someone, have a think about what response you would like from the other person. Would you like a hug? Silent listening? Some words of wisdom? Some kind of action? You’re more likely to get it if you ask.

Good luck!

This article was contributed by an Addison's Disease Self-Help Group member with primary Addison's Disease.