What It’s Like to Live with an Invisible Illness

What It’s Like to Live with an Invisible Illness

I discussed in a recent column whether we should correct others when they see only our illness. This week, I’m looking at the opposing viewpoint: when our disease is invisible, it can be forgotten or questioned by others.

Endometriosis falls under the umbrella of what we call “invisible illnesses.” I have often wondered what it means to label a disease this way. For me, “invisible” carries connotations of genuinely not existing. Moreover, when something is invisible, it’s easy to ignore. 

The term “invisible illness” refers to any disease that is not immediately apparent to others. You can’t see pain, which is a huge part of endometriosis, and the same goes for other symptoms such as migraines and chronic fatigue. Endometriosis is so good at being invisible that its diagnosis currently can only be confirmed via laparoscopic surgery, which entails having a proper look (and a prod) at someone’s insides.

However, invisibility also means that when you live with a chronic disease for years, you become so adept at masking the effects of some symptoms that people forget you are chronically sick.

Making your illness invisible becomes your party trick

I was complaining about muscle pain to a close friend and explaining how I’m going to ask my doctor about fibromyalgia. My friend, who has seen me run a marathon and walk for hours, interjected that fibromyalgia is super-painful — the implication was that “you don’t seem to be in that much pain.” The next morning, feeling energized and somewhat pain-free, I sent a video of me doing a little dance to Rita Ora’s latest bop. The immediate response was “you don’t seem in pain anymore” and a smiling emoji. I love my friend, dearly, and I know they were happy that I was feeling better and relieved to see me moving again.

However, due to some past experiences with other human beings who are not as understanding and supportive, I worried that I was being called out for exaggerating or misrepresenting my symptoms. 

My friend doesn’t see me on most mornings as I struggle to get out of bed — a mixture of pain, depression, and zero energy.

They saw one good morning because that’s what I chose to share

I am good at masking my symptoms, but I don’t do it to be dishonest or hide things from anyone. I do it because when you hurt every day, you grow accustomed to avoiding references to the pain. We don’t forget about the discomfort, and we don’t know what it is to live without it. So, we run, shop for food, do our job, have sex — all of these while in pain. 

My chronic illness means that I’ll go to the cinema while suffering from horrid cramps or help a friend move while feeling nauseous. I will dance to Madonna’s new record with a burning sensation in my uterus.

What is the alternative? Tell everyone how it hurts every day? Carry a banner that reads: “In pain again”? Wake up and send an email to all of my contacts about how badly I’ve slept? So, I carry on, sick — but not sick enough that it is visible to others. 

 

He sees it all, and miraculously, stays around. (Photo by Jessie Madrigal)

 

As endometriosis patients, we are the ones experiencing the disease, aware of how much it’s hidden behind a smile. Besides ourselves, no one keeps tabs on the flare-ups we are living with. Perhaps the invisible tag highlights how successful many of us are at functioning in life. I have to see it that way because I can’t live with worrying whether others believe that I am ill enough.

People will always make assumptions, and I cannot control that

This disease has different versions. If someone is having a good year, it doesn’t mean that their symptoms won’t progress and limit their quality of life a few months into the future.

My version of endometriosis, right now, is mine alone. If on certain days it allows me to get up, slap on some makeup, and do a little dance, I will do just that. 

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Note: Endometriosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Endometriosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to endometriosis.

My name is Jessie. I am a writer and part-time Yoga instructor living in the south of England. Since being diagnosed with endometriosis, I’m determined to be the boss of my chronic illness. You’ll find me with two sausage dogs curled up on my belly and my duvet nearby, writing about life and whatever my mind thinks up. This is my journey.
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My name is Jessie. I am a writer and part-time Yoga instructor living in the south of England. Since being diagnosed with endometriosis, I’m determined to be the boss of my chronic illness. You’ll find me with two sausage dogs curled up on my belly and my duvet nearby, writing about life and whatever my mind thinks up. This is my journey.

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