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Tips for Communicating Your Endometriosis Experience With Loved Ones

Posted on November 30, 2016

by kaylaadams

Endometriosis has this insidious, subtle way of fostering isolation. Just as the cause of our pain is often invisible from the outside, we can begin to feel as if we’re living detached from the life we want by an invisible curtain of pain. This intangible veil of discomfort/sickness/hurt colors our interactions and can make it so hard to feel connected, even to those closest to us. The irony of adjusting to a life with constant pain is that at the very time you’re most in need of the love and support of those around you, your relationships are being challenged and affected by the same cause of that need. Long-term illness produces a disequilibrium in the structure of our established bonds. Our loved ones are suddenly thrown into a new world, too; one where they’re often confused and scrambling to adjust to our new normal.

Each person we’re in a relationship with has expectations; we have expectations; and the delicate dance of illness can cause those respective needs and wants to step on each other’s toes. We’re all human. We’re not perfect, and it’s so easy to forget that presumptions sometimes need shifting. I think there are ways to receive the validation we crave from our loved ones, and, along the way, learn to build new rules of engagement that also provide them with the elements they need for positive interaction. And it all starts with education. So, here are some tips I’ve found useful in communicating more skillfully to my loved ones about my endometriosis:

1. Find a good documentary about your condition and have a viewing party.

My immediate family got together to watch the Endo What documentary, and it was the most effective way I’ve found in communicating, especially to the male members of my family, what I’m going through. The fact that they were all willing to give up an evening of their time to learn more about what I’m going through made me feel so supported and loved, and removing the personal, emotional element from the equation helped my family members to absorb the information in a new way. As soon as it was over, my dad came over and gave me a big bear hug.

2. Find books or articles about your illness, and give/send them to those closest to you.
Take this a step further, by finding specific pages/sections of a book and photocopying and then highlighting the parts that most apply to you, before distributing them. Personally, the prospect of my personal struggle being misrepresented, gives me anxiety, so I like the idea of tailoring the information my loved ones get to fit my situation. This also gives them a more concise, precise body of knowledge as opposed to having to wade through everything the internet has to offer.

3. Share the spoon theory with them.
This disability metaphor blew my mind when I first read it, as it gave me a way to communicate my energy deficits in such an accurate way. It’s an incredibly effective method of getting your friends and family to put themselves in your shoes, and you might eventually even find them asking you, “how many spoons do you have left today?”

4. Lovingly, openly, and with explanation, set boundaries.
A big part of this is knowing for yourself when to avoid heavy conversations, activities, and issues. When I’m in the midst of a flare, I’ve found it more manageable to keep interactions simple because every exchange has the potential to be emotionally charged. Sometimes you’ll just need to let everyone know that you need some space. If you’ve previously set boundaries and explained that this is necessary for your own ability to cope with pain, your friends and family will be more able to accept and understand when you express your need for solitude and simplicity.

5. Write a letter.
If you find that your attempts to educate a loved one haven’t noticeably affected the way he/she understands your illness, then writing down, in your own words, the way that your daily life has been impacted and how you feel about all of these changes can allow him/her a view from a different angle; one that might strike a new chord within him/her. I always find writing a letter to be an effective mode of communication, as it allows you time and rationality to calmly compile your thoughts and express yourself in the clearest way possible.

6. Escape.
Find ways to interact that don’t involve your illness. Have friends over for a movie night. Go out for coffee. Talk about other things. While being sick is a part of every second of your existence, your relationships will be much more enjoyable if your every interaction doesn’t devolve into you talking about your illness. Exploring shared interests, learning about their latest goals, laughing together, provides all of you with a much needed respite from thinking about your pain, and allows your relationship to be made up of a much more complex and rich tapestry.

7. Accept their limitations.
Some of your loved ones may never fully come to terms with the way that you (and, subsequently, your relationship with them) have changed. Your condition may trigger their own fears about pain and sickness, or they may just have an exceptionally difficult time adapting to changes. You can’t always control how others think of you or treat you, but you can protect yourself from allowing their lack of understanding to exacerbate your symptoms. Enact tip #4 with even more fervor for these people, and acknowledge the fact that your relationship may have to reside in a more shallow place.

While most of our energy and attention is focused on just getting through each day, it can often feel like an exhausting burden to take responsibility for educating those around us. If you’re reading this as a friend or family member of someone with a chronic condition, try to take education into your own hands. With no prompting from me, my mom has read my dad online stories from other women online with endometriosis; my best friend has spent time researching gifts she could give me that would specifically help with my endo pain; my partner has randomly dropped tidbits of knowledge I never shared with him about my illness; friends have asked for information on the Endo What documentary so they could watch. Each time something like this happens, it feels like a beautiful plant is unfurling and growing new buds in my heart, and I’m overwhelmed with gratitude.
Don’t be offended by last minute cancellations; try not to guilt trip your sick friend/family member over how they’ve changed; offer to help with cleaning, groceries, making food, fundraising efforts; validate our feelings; keep a balanced perspective, don’t just focus on what we can’t do, but also remind us of what we still can do; take care of yourself – you can’t continue to support and build us up if you don’t pour into your own physical and emotional well of health.

The overwhelming nature of chronic illness and pain, coupled with its resulting isolation, can swiftly turn into loneliness and depression. I encourage each person reading this to do what you can to foster constructive, efficacious, earnest, thoughtful relationships.
How do you share your experience with endometriosis with loved ones?

This post originally appeared here and is reposted with permission.

Kayla is a writer living in Vancouver, BC (Canada). She was diagnosed with stage IV Endometriosis on her ovaries, uterus, and bowels at age 25 and blogs for various websites. She's a feminist, animal lover, and tattoo enthusiast and is in the early stages of starting her own endo blog and charity.

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