Endometriosis can be a difficult disease to manage, both for those who have it and those who love them and watch them struggle.
The people on the outside looking in can feel lost and desperate to help, but not quite sure where to start. And sometimes we who are struggling may not know what we need or how to ask for help.
A strong support system is so important for any person with a chronic illness, because pain and sickness can be really isolating and depressing, and physical symptoms can get in the way of day-to-day life.
Here are some ways you can help your loved one manage their illness, and make them feel supported and loved through their struggle.
Seven ways to support someone with endo
1. Ask us what you can do to help
This one sounds simple, but is really powerful.
It’s easy for us to get stuck in our own heads and focus on all the things we have to do to take care of ourselves, that we don’t think about how others might be able to share some of the load.
Simply asking how you can help us reminds us that we don’t have to do everything alone, and can even instantly lift some of the pressure we might be feeling.
Locked down? In a lockdown situation, options to help in person might be limited, but you can always ask if there’s something else you can do that’s within what’s allowed in your local area. Maybe they’re having trouble juggling housework and you could drop off a home-cooked meal, or you could
2. Distract us
Pain can be all-consuming and overwhelming, which makes distracting your loved one from their pain a really good way to help them manage through a flare up.
Whether it’s an entertaining story about your day, a cute video of unlikely animal friends, relatable memes, or some good old-fashioned jokes, distractions are almost always welcome to someone in pain.
Some people say laughter is the best medicine, and they might be onto something. Laughing is a great distraction from pain and has proven positive health benefits. In fact, the Endometriosis Australia podcast, Living with Endo, has a whole episode on “laughing yoga”.
Locked down? In lockdown, you might not be able to provide distraction in person, but there are other ways to distract us! Even an unplanned phone call could give some relief and brighten their day, or your latest Netflix recommendation could keep them distracted and give you two something to chat about.
3. Just listen
Sometimes we don’t want to talk about how we’re feeling or about our pain because we don’t want to bring other people down. But a burden shared is a burden halved, so as much as we don’t want to be a downer, we do need to talk about it sometimes.
So one of the most important things you can do is just to listen if and when we want to talk. You don’t need to have solutions or suggestions, and it’s okay to admit that you don’t know what to say or that you can’t imagine how it feels. Sometimes we just need to get it out.
Locked down? Listening is one thing that’s not restricted by lockdowns (yay). Whether it’s by text, over the phone, a video conference, or in person if you’re allowed, you can always make space to listen.
4. Learn about our experience and ask us questions
Having someone show interest and put effort into understanding what we’re going through makes us feel seen.
Simply Googling endometriosis to find out what it is and how it affects sufferers could be enough to let your loved one know you care enough to be curious about what they’re going through.
While there are common experiences between lots of people with endo, it is notoriously individualised, so asking them about their own experiences will help you better understand what they’re personally facing.
And as long as you’re respectful and thoughtful, asking questions about what it feels like and what they might find most difficult or distressing will let them know that you care.
Locked down? Lockdown is a great time to do a bit of Googling about endo to get educated and support your loved one. The Endometriosis Australia website is a great place to start if you’re looking for information about endo and the impacts the disease has on patients.
5. Help us manage day-to-day life
Fatigue and chronic pain are key symptoms of endometriosis that many people suffer with daily, making it difficult to keep on top of day-to-day tasks that healthy people might take for granted.
When you have the chance, helping us manage these small things can really go a long way. Extra hands make lighter work! And if you can take over altogether so they can rest when they need it, that’s even better.
Locked down? In lockdown, this might be more difficult to do if you don’t live in the same household, but there are other ways you can still help them lighten the load – maybe make them a meal so they don’t have to, or ask if you can pick up anything they need from the shops and drop it off to them.
6. Tell us how you see us
Chronic illness can really skew how a person sees themselves and mess with their mental health.
Maybe they resent their body for what it’s putting them through; feel like they’re weak and should be able to handle more; or just generally feel down about themselves — being in chronic pain will do that (and more) to a person.
That’s why it’s a good idea to remind your loved one what you see when you think of them and what you love about them. Maybe you admire their strength, love their positivity, or think they’re really talented.
Whatever it is, remind them sometimes.
Locked down? At this time, it’s even more likely that the people around us are struggling with their mental health. Endo-warrior or not, kind words can really brighten someone’s day.
7. Consider changing plans to make it easier for us
Our condition can really make us feel like a burden to the people around us, and sometimes we might not want to propose simple changes to plans for fear of being a nuisance. Instead, we might try to tough it out to our own detriment, or just cancel altogether.
That’s where you can potentially lighten the load, by being conscious of ways you could make it easier. If they cancel dinner plans, maybe ask if they want you to come over and keep them company instead. Or, when making plans to hang out, consider their physical limitations: is there parking/transport nearby, or will they have to walk a long distance?
You don’t even always have to think of the solution yourself. Just asking what would be easiest for them creates a safe space where they don’t feel like they have to put themselves out to avoid being a burden.
And if they ever can’t make it to something because they’re unwell, reminding them that you’re missing them can go a long way!
Locked down? Lockdown has arguably made it easier than ever for people with chronic illness to connect with friends and family in a way that works for them. Even post-pandemic, virtual catch ups might be something to keep in mind as a way to connect with your endo-warrior loved ones.
Hear from the Author: Natarsha Terreiro
Listen to Natarsha’s endo story on our podcast Living With Endo!