Resources

You Are Not a Burden: Social Support + Endometriosis

Finding great support is hard, but not impossible.

Hand working together with love

Living with endometriosis is like living on a perpetual roller coaster. It’s hard to predict what’s coming around the corner, full of ups and downs, and don’t forget the nausea. Part of dealing with the peaks and valleys of living with endo (and life in general) is finding people who understand us, will listen to us, and are dependable during trying times. 

Giving and receiving support is a primitive human need, but can be scary to ask for, especially when living with a disease that can make you feel like a burden on everyone around you.

A social support system improves our well-being, encourages better coping skills and helps us live healthier lives. A recent surge in research on loneliness shows alarming results that social isolation is consistently associated with poorer health. Support also reduces the severity of depression and anxiety, an important factor to note when you consider that over three-quarters of people with symptomatic endometriosis experience depression.

Support

Types of support

Giving and receiving support looks different for everyone, but there are four basic supportive behaviours.

Emotional support

This includes expressing love, empathy, trust and caring towards others. Often we find this in close friends and family who provide a listening ear, compassionate care, and instill hope. This can also come from people who have gone through similar experiences, like many of us find in the endo community.

Instrumental support

For fans of the 5 Love Languages, instrumental support is much like Acts of Service, in that it provides tangible assistance that relieves stress or worry. For those with partners or families, it may look like a change to a partner’s work schedule to accommodate specialist appointments. For those living alone, it could be a neighbour doing a grocery run or bringing the bins in on garbage day.

Multiple doors with different everyday household items left at the door.

Informational support

Advice, suggestions and information from experts and professionals is a key component of support to give patients self-efficacy and the ability to make informed choices. The informational overload that comes with a disease like endo is overwhelming, and connecting with health professionals you trust is a key component of support.

Appraisal support

This consists of any information that may be useful for self-evaluation. Sometimes we need a little reminder of all of the personal qualities that equip us for living with an illness like endo. Do you have a particular gift for sharing your story? Use that as a way to connect with others and hold space for everyone’s individual journey. Are you an assertive communicator in your job? Tap into that when meeting health professionals and self-advocate if you’re struggling for recognition in the medical community.

So how do you find these types of social support when social isolation is the new normal? How do you feel confident reaching out for support when you’re used to feeling like a burden to everyone in your life? Especially in pandemic times when everyone has added stress and worry, reaching out for support is crucial for our long-term health and well-being.

Finding support in strange times

With pretty much everything going online these days, there is added strain on people with chronic illness who don’t have access to their regular support systems. Here are a few ways you can still find support while respecting physical distancing.

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Phone a friend

Remember phone calls?? We’re so inundated with video chats and group calls, but people dealing with endo know – sometimes you just don’t want to see anybody. But that doesn’t mean you don’t want to talk! Next time you’re curled up with your heating pad, phone a friend or family member just to chat. Chances are pretty high they’ll be thrilled to hear from you, and catching up is the perfect way to alleviate some loneliness, even if you’re just discussing your current streaming obsessions. Talking to people who know and love us is a great way to remind ourselves of what we’re capable of, especially if pain has made us forget.

Ask for help

Is your pain preventing you from stocking up on groceries? Are you battling multiple conditions that leave you immunocompromised? There’s been a surge of online “CareMongering” groups since physical distancing measures began, with people offering or asking for help with errands and miscellaneous tasks. Check and see if there’s one in your area, or reach out to a neighbour, friend or family member to see if they’ll drop off some necessities for you. You may be surprised at the result! Asking for help is one of the most difficult, vulnerable things you can do, and is very challenging for many people. But it’s helpful to remember that people aren’t mind-readers (as much as we want them to be!) and it’s okay to ask for what we need.

Designate a hype squad

We all need those go-to people who make us feel like we can do anything. Make yourself a mental – or physical – list of people in your life who can pump you up, and then get in touch when you need a boost. We’re more likely to believe in our ability to overcome something if we’re reminded of past accomplishments – no matter how big or small.

Go online

Yes, we know – everything is going online now and sometimes you just need some time away from the screen. That is definitely important these days! But when you’re not indulging in some screen-free time, there is a vast network of online support groups for just about anything you might need. 

There is a TENC Facebook Support Group for Canadians to share experiences and look for advice. Do a Google search for “endometriosis online support” and you’ll find a host of resources at your fingertips. It can be intimidating to enter into those spaces, but sometimes all you need is one or a handful of people you really connect with to make a difference. Found them? Organize a call where everyone has space to vent and to support each other – no one is a burden when we carry the load together.

Still craving the sound of someone’s voice or the sight of another human being? The monthly in-person support group that launched a Network is now online, and we’ve connected people with endometriosis from across the country. Please email us if you’re interested in registering. We would love to see you there!