I'm Glad I Look OK, but I'm Struggling Just to Stand Here

“I’m sick.”

“I have health issues.”

“I struggle with chronic illness.”

“I can’t %@# stand here any longer!”

How does one tell an acquaintance, a neighbor or a store clerk that one has an invisible disease? It’s a skill I never wanted to learn, and I’ve got to admit I’m not yet good at it. Mostly when people ask me how I am, I say “fine,” and I still think that’s the best answer when dealing with a stranger – when the question is purely perfunctory. But what about a distant family member, an old friend, or someone I see on a regular basis? What about when I truly need to convey information about my physical limitations?

In those cases “fine” becomes either a passive-aggressive lie, a self-defeating postponement of the truth, or a trigger for escalating illness. Because I’m not fine. I’m not OK, and there’s a fair chance I never will be.

“How are you?”
“Well, I’m OK emotionally, but physically I’m a wreck. Thanks for asking.”

“It’s been awhile. You look great!”
“I’m glad you think I look all right, but I’m struggling just to stand here. Do you see a chair?”

In my heart I know that those neighbors, acquaintances and relatives with whom I only occasionally touch bases want to hear that I’m doing well. They’re not being unkind, and they wade into an awkward subject before they understand what they’ve done.

“I heard you were sick awhile back. Thank goodness that’s behind you.”
“It’s not, exactly.”
“But you look so good!”
“Er – thanks?”

All the time I’m talking to others, I’m keenly aware that my sickness isn’t their problem. I have elderly relations who, every time I see them, recite their current list of symptoms and daily regimen of medications, along with the unpleasant side effects. I don’t enjoy hearing that, and I don’t want to be that person – I don’t want sickness to be the center of every conversation. But I’ve got to admit that right now sickness is a big part of my life, and while I hope that the terms of my existence won’t always chafe so much, if someone who cares about me wants to know what’s going on with me – well, I’m sick, and my sickness can be so isolating that it feels as if no one in the world understands.

Sometimes I want to walk into a room and scream, “I have a disease, and it’s the worst disease in the world – worse than yours. It’s changed my life in every way, and I can’t vacuum my carpet, or cut my fingernails, or fold clothes without thinking about the energy it will cost. And I can’t work. My husband has had to shoulder my responsibilities along with his own, and I feel useless, and shocked at my fate, and I lie in bed at night and think about how small my life has become, and it terrifies me. And when you talk about world travel, and painting your house, and cleaning your closet, and hiking amazing trails, and making your home into a Christmas wonderland, I’m happy for you. I really am. But I’m also reminded of all the things I can no longer do, all the doors that have shut in my face, and it makes me want to weep.”

This sickness of mine is between me and my Maker. I know that. I’m nobody’s victim – no one owes me anything. Still, I’m a social animal – I long to be seen and heard and understood. If I can’t find a way to tell others about my illness, they’ll continue to see only my rouged face and lipstick smile, and that will make me feel as invisible as my disease.

So I’ll keep searching for a way to articulate my new reality – without self-pity, anger or shame – and maybe someday it will come easier to me. Until then, it would help so much if, the next time I met an old friend in my local grocery store, or at the mailbox, or at a family event, the question wasn’t “How are you?” but “How are you feeling?”

“How are you feeling?”
“Not great this week, but before that I had a few decent days. What’s new with you? How are your grandkids?”
“Good, and I want to tell you about them – after we find you a chair.”

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

Thinkstock Image By: TonTectonix

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

Related to Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

An young woman falling asleep on the couch with a book in hand.

The Difficulty of Living With a Fluctuating Condition

I don’t know about the rest of you, but there is such a difference between my good and bad days. Yes, I pace which is the number one advice for people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). I pace till I’m blue in the face (not literally blue, you understand). People pace differently, but it [...]
illustration of a woman smiling and brushing back her hair

With Chronic Illness, My Spirit May Be Genuine but My Smile Is Fake

When you see me, I will always smile, ask you how you are and share a kind word or compliment. If you are sad, I will listen; if you are happy, I am happy for you. In fact, I love people, listening to them, helping them and bringing happiness to their lives when I can. All [...]
watercolor painting of a woman sitting at a desk sleeping

Why I Don't Tell People I Have ME/CFS

I have ME/CFS. Man, that is really hard for me to say out loud. It is hard to even accept the fact that this unwanted alienator is going to be present most likely the rest of my life. It also is hard to explain what ME/CFS feels like. As is true with most everything in [...]
Black and white image of a woman looking seriously into camera.

Losing Myself to Myalgic Encephalomyelitis

The doctor walks into the room and gives me my diagnosis – myalgic encephalomyelitis (ME). Finally, a name (and what a name!) to what has been happening. A sense of relief actually washes over me. Almost a weird sense of elation. Even though I’ve just been told I have a chronic, painful, incurable condition. A [...]