Skip to main content Despite huge improvements in care for people in Australia living with endometriosis, it can still be difficult for young people to seek and find help to manage the distressing symptoms that come with this chronic condition. It is a tricky field to navigate solo, and everyone with endometriosis will benefit from having someone on their team to help them access all the care they need. Here’s what you can do as a parent to make this journey easier for your child.
Believe them
Endometriosis is an invisible illness. It is an unpredictable illness. Your child may look fit and healthy and able to participate in daily life one day and be bedridden with pain the next. This doesn’t mean that what they are going through isn’t real. Pain days can come with no warning and the ability to cope with that pain will vary from day to day. Your child will encounter plenty of people who express disbelief about the severity of their condition and you need to be the person who will always support and believe them, no matter what.
Learn about endometriosis
'Knowledge is power' is especially true when it comes to managing chronic illnesses. You can spend a lifetime researching endometriosis and still not fully understand the disease. Unfortunately, this means that a lot of health care providers may not have a very good understanding of endometriosis, what it looks like, and what to do about it. If you know the basics, then you will be empowered to ask questions or seek second opinions if your child is not getting the care you think they need. You’ve already started on this journey of knowledge by reading this article, and there is plenty more to learn on EndoZone. Local support groups are also a wealth of information for those who are starting out and feeling overwhelmed. And while you are there…
Figure out who your local experts are
Support groups are a great place to ask about who the best people to see are in your area. If you have a trusted family general practitioner they may also be able to help you find local experts. Diagnosis, treatment, and management of endometriosis is an ever-changing field and getting your child on a path that works for them at the start of their journey may help improve their long term outcomes. It will also help your child be more comfortable managing their own illness without your help (when the time comes) if they have a trusted team.
Be ready to step back
To date, there is no cure for endometriosis. If your child is diagnosed, this will be a condition that is present for the rest of their life. Many people will find a way to live without bothersome symptoms, but some will need regular medication, physiotherapy, psychology, or other treatments to stay on top of things. One day your child will need to manage this by themselves. They will need to choose their treatment, choose their team, and manage how their condition may or may not affect their daily life. That doesn’t mean they won’t value your ongoing support and advice or appreciate you holding their hand at an appointment. It means that one day your child will be an adult in charge of their own life and you will need to hand them that control.
