Many symptoms of multiple sclerosis are invisible to the casual observer. We aren’t all in wheelchairs or use canes, nor do we all share the same obvious symptoms. We often appear to be the very picture of health.
In many ways, that’s a good thing. Who doesn’t want to look healthy, strong, and vital? In fact, some of us go to great lengths to achieve that healthy look. But the invisible symptoms of M.S. can also cause misunderstanding and lead to emotional stress.
Some of the most common complaints of people with M.S. are fatigue, numbness, and weakness– things that cannot be seen and often cannot be understood by those who have not experienced them at high levels. These seemingly benign symptoms can necessitate missing work, school, or social obligations, causing chores to pile up and misunderstandings to arise.
That’s enough to contend with, but what if your family, friends, and co-workers don’t really believe you? What if they think you are faking, or taking advantage of your diagnosis?
“But you look so good” is the phrase that in most circles is taken as a compliment, but people who live with invisible illness often view it as having a double meaning. We may be inclined to wonder if the real meaning was, “you look fine — there’s obviously nothing wrong with you, so why are you faking it?”
That kind of emotional mind game can take a heavy toll and even leave us to question ourselves. It’s not difficult to fall into that trap. In the long run, we are limited by how much we can change someone else’s thinking, but eventually, we’ve got to make peace with ourselves.
We can do our best to educate those closest to us, to help them understand invisible illness. But at some point we’ve also got to stop evaluating ourselves based on what others choose to believe. Not everyone will get it, and we cannot allow that to affect our own self-worth.
If we put in the effort to look good, perhaps it’s best to accept the compliment and not concern ourselves with any hidden — or not so hidden — meanings. Ultimately, we live with our own truth.
If you love someone who lives with invisible illness, please take the time to learn all you can about their condition and really listen to what they have to say. Appearances can be deceiving, and not always a good indication of health status.
And one more tip — instead of saying, “But you look so good!” try “You look great… but how are you really?” A little compassion goes a long way.
Writer Ann Pietrangelo embraces the concept of personal responsibility for health and wellness. As a multiple sclerosis patient, she combines a healthy lifestyle and education with modern medicine, and seeks to provide information and support to others. She is a regular contributor to Care2.com’s Reform Health Policy blog in Causes. This was originally posted on Care2.com and has been reprinted with the author’s permission.
- Creating Pain Awareness Through Photography (invisibleillnessweek.com)
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By Ann Pietrangelo
Last week’s post [at Care2] about an able-bodied woman using a handicapped parking space, then suing over the ticket she received, resulted in spirited conversation in the comments section.
It’s an emotional topic for a lot of people, not the least of whom are those who have the legal right to use the specially marked spaces, but who have an invisible disability. Judgments are often made based on nothing more than appearance.
When a person with an invisible disability pulls into a handicapped parking space, even with the appropriate legal tags, they are apt to get stares, glares, and outright anger.
We can try to educate others to understand invisible illness, should the inspiration strike, but we should never apologize for needing or using a handicapped parking placard. We owe no explanations. It stings, but not everyone will get it or care. Such is life.
If you’ve ever observed a seemingly healthy person pull into a handicapped parking space and felt anger toward them, you might want to consider there might be more to the story… and thank your lucky stars for your good fortune.
It could be a heart condition, a neurological condition, or any of a long list of chronic illnesses that affect mobility. Appearances can be mighty deceiving. Not all disabilities require a wheelchair.
Rather than give up and lock themselves away, these folks choose to go out into the world. Bravo! The little extra help from a more convenient parking space makes that less daunting.
While you observe them walk from the parking space, you are not privy to the advance planning that allowed them to get this far on this day. You don’t see added burden when they find that a business has stairs, but no elevator; or a door too heavy to pull; or the long line at the register that will severely test their strength and stamina.
If you don’t need special parking, please don’t resent or judge those who do. It is called a privilege, but no one really wishes for health problems in order to get this privilege. No, people who need it would rather not. Trust me on that.
Daily life is can be a hassle, and wouldn’t it be great if we could all just pull up in the first spot in the lot and get to our business?
That we have the ability to walk and take care of our own errands… that we can climb the stairs and pull the door open and even hold it for the next person… that we do not need the handicapped parking spot… that is the true privilege.
I have relapsing/remitting multiple sclerosis, and with that comes constant change. Sometimes I can’t walk more than a few feet at a time, sometimes not at all; much of the time I can walk, and it is a glorious privilege, one I shall not squander or take for granted.
If you can walk without too much difficulty, if you do not require a handicapped parking placard, you are fortunate indeed.
Savor the privilege of walking.
Writer Ann Pietrangelo embraces the concept of personal responsibility for health and wellness. As a multiple sclerosis patient, she combines a healthy lifestyle and education with modern medicine, and seeks to provide information and support to others. She is a regular contributor to Care2.com’s Reform Health Policy blog in Causes.
This was originally posted on Care2.com and has been reprinted with the author’s permission. Follow Ann on and has been reprinted with the author’s permission. Follow Ann on Twitter @AnnPietrangelo
- Ever Considered Leaving a NICE Note for Some Parking in the Handicapped Spot? (invisibleillnessweek.com)
- Parking officers blasted for using disabled spot (thestar.com)
- Just Imagine. . . Trying to Explain Daily Life to a Healthy Person (invisibleillnessweek.com)
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Laurie Edwards, author of Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties is a gifted writer. Her blog posts are both friendly, but also written with a professional tone that makes me feel as though my blog posts are the ramblings of a thirteen-year-old’s diary.
She didn’t disappoint this week, taking time to write a blog post called “On Invisible Illness.”
…all I can do is write about where I am right now.
Overwhelmed. Exhausted. Exhilarated. Optimistic. Anxious. Trying to plan for the unpredictable, willing my body to cooperate for me and not let me down, and trying to squash the voice that’s whispering Haven’t you learned anything yet?
I’m adjusting to some new work changes and client load and embracing the opportunities with gratitude. It is a precarious balance, though, and while I loathe cliché, it does seem like all it will take is one slip and everything could tumble down like a house of cards.
I mean, all I have to do is stay as healthy as possible, right? (Insert cynical tone here.)
But I cannot indulge the what-if’s and the doubts. It does me no good, and it flies in the face of my reason thoughts on hope.
And really, in the middle of a lot of changes and decisions and pressure, what this tension is about is identity. It’s an ongoing evolution; just when I think I’ve established a groove, I need to re-calibrate.
Take a moment to head on over to her blog and read this post in full. She is encouraging as she shares her own experiences, but will also make you smile and also reflect on your own situation.
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