Ask The Advocate: Coping with an Invisible Illness - Part 1
For someone with endometriosis, "You don't look sick" can be one of the most frustrating things to hear. Even though the symptoms of endometriosis can be frequent, and severe, outsiders may not know what you're dealing with, or how difficult endometriosis can be.
As part of Invisible Illness Awareness Week, we asked our Endometriosis.net advocates, "How does living with an invisible illness affect your daily life?". If you've ever felt frustrated by your endometriosis, check-out their responses:
At first, I felt that I needed the validation of other’s understanding of what I was going through. It can be emotionally challenging and isolating to deal with an illness that people can’t see. But, the reality is, it’s hard for people to truly sympathize with a struggle that they’ve never experienced, or if they can’t see the symptoms. Once I accepted the fact that people are either going to respect my way of living – doing what I need to take care of my body – or they’re not and either way, I need to continue on with my healing path and not hold their decision against them. People often times have a hard time seeing past their own struggles, and that has nothing to do with me. So, I need to take care of myself, and be the best friend I can be to them as they experience their own challenges in life. We’re all trying to do this life together. Read more about Alene here.
Living with an invisible illness can mean worrying that others are making incorrect assumptions about your behavior. For example, if I need to miss work or a function because of my endo symptoms, I sometimes worry that people think I'm being lazy, irresponsible, or anti-social. We don't "look" sick, and we may not feel comfortable explaining to everyone what we're feeling physically. Nor should we have to! Read more about Jess here.
It affects me from the moment I wake up. Depending on how my body is feeling, what day of the cycle I’m on, and where energy levels are at. Some days, I can do so much, while others, any form of physical or mental activity is out of the question. Sometimes I wake up in pain, others with bouts of nausea. Life with endometriosis is a day-by-day kind of existence. The message I’d like to communicate is that an invisible illness is present every day. You may not be able to see it, but it’s definitively there. It defines your life, your job, your relationships, and your life choices. It’s something that requires plenty of adjustments and a good amount of understanding from those around you. Read more about Jessie here.
I don’t really think of endometriosis as invisible. It’s more that only surgeons with a scalpel can see it. To be honest, not having visible symptoms can work in my favor. I wouldn’t want people to think I couldn’t handle something just because I have endometriosis. I like being able to “hide” my symptoms and go about the day on my terms. On the other hand, it’s harder to validate my pain, something women have struggled with for centuries. Read more about Keri here.
The most simple way to describe daily life is screaming on the inside while smiling on the outside. Who knew we are all capable of acting?! My advice? Be kind, always. We never know the battles each other are facing, whether it's physical or emotional. Always live your life by thinking the best of everyone. If someone is driving like a maniac, maybe they have an emergency. If someone is irritable and snappy, maybe they are in extreme pain. If someone is impatient, maybe they want to hurry and be alone before they break down to tears. Hold doors, smile, say please and thank you, and return to what we learned in kindergarten... treat people how you would like to be treated. Read more about Lia here.
Share your experiences
How has living with an invisible illness affected your daily life? What do you wish others knew? Share with us in the comments or by submitting your own story story here.
Read Part 2 here
Have you altered your diet to try and reduce your endometriosis symptoms? If so, did it help?