Why I Dislike the Term ‘Invisible Illness’

I dislike the term “invisible illness.” In fact I refuse to use it other than in this one story.

Why do I dislike this term? Because I believe it is too often used to excuse ignorance or prejudice. People may not be able to immediately tell by looking at me, but I am chronically ill. I may not be bleeding or bruised, you cannot see any physical symptoms, but my illness is not invisible. It is there. I deal with it every single day and it will always be there.

If you care to look close enough…

You can see it in my absence from events, dinners, catch ups with family and friends.

You can see it in the declined invitations.

You can see it in the unanswered text messages, because I have another migraine and can’t look at my phone.

You can see it in my inability to work normal hours.

You can see it in the enormous amount of effort it can take me to do tasks that others consider simple.

You can see it in the last-minute cancellations, when my pain levels are too high or I have no energy to leave the house.

You can see it in my inability to get through the day without a nap, because I am exhausted from the moment I wake up.

You can see it in the effort it takes me to hold a conversation or complete an assignment, when the mind fog takes over and my brain feels like a bowl of scrambled eggs.

You can see it in the way I clutch to things for support when standing, because I feel dizzy and like I might collapse.

You can see it in the way I over explain everything, because of the overwhelming sense of guilt I feel when I can’t do the things everyone else is doing.

You can see it when I wince or cry out in pain because of the random electric shocks going through my body or sharp stabbing pains that can make their presence known at any given time.

You can see it in my inability to breathe deeply, when the chest pain randomly shows up.

You can see it in the carefully planned outings and my endless lists.

You can see it in my eyes, because I am permanently exhausted.

You can see it in the way I walk, because my body feels like a lead balloon and everything hurts.

You can see it when I curl up on the couch or in bed as soon as I get home, because the pain is horrible and I’ve exceeded my limits for the day.

It is visible to all those people living with an illness. Those who have been told they look fine so they can’t be that sick. When people use the term “invisible” or question someone’s battles, it is hurtful and shows that they haven’t taken the time to truly consider what that person is living with. My illness has changed my life and it is something I deal with every moment of every day. Chronic illness affects people physically, mentally and emotionally and it is not invisible. It is very clear to those living with it and those that love them. So, if you care about someone with a disability, illness or disease please take the time to listen, understand and see their illness.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by cindygoff

Find this story helpful? Share it with someone you care about.

Related to Chronic Illness

A woman smiling, looking down at the camera with her dog.

Why I Choose to Only Share the Good in My Life With Chronic Illness

I’m just like you. Just like pretty much every other person with a chronic illness that we struggle and live with every single day. A person who is always struggling with one thing or another, be it a full blown flare, fatigue, side effects from the medications, pain. It’s always something. We pretty much have to choose sometimes [...]
Lonely young man shot from behind at subway station with blurry moving train in background

I May Look Healthy, But I Can't Give You My Seat

The other day I couldn’t give up my seat on the metro to an elderly woman. When the elderly woman entered the metro, she looked to me automatically, expecting me to stand up and offer my seat. Another woman standing nearby, eyed me down and immediately asked if I could please give up my seat [...]
woman lying on yoga mat

My 5 Daily Essentials for Life With Chronic Illness

As a former perfectionist and workaholic, chronic illness has forced me to change my ways. The first five years after being diagnosed with ankylosing spondylitis, Hashimoto’s thyroiditis, and adrenal fatigue, I was still pushing myself too hard and trying to do too much. This resulted in more frequent flare-ups, and a higher level of chronic [...]
Silhouette of woman, close-up

Tips for People With Chronic Illness Who Find Self-Care to Be Difficult

Hearing the words “self-care,” my first instinct is to laugh. It’s nervous, scared laughter because those words make me extremely uncomfortable. I know what self-care is – any intentional actions taken to take care of physical and mental health. It’s hard, though. So hard. That’s why I get all jittery thinking about self-care. Life is [...]