Personal Writings

Visibility

By March 16, 2014 2 Comments

Visible or invisible – which do you prefer?

I once saw this question asked in an interview directed towards a specially abled individual. It refers, not to a cloak (disappointingly), but to the visibility of a medical ailment. Someone with a broken leg encased in a cast sports a visible injury. A skin disorder is visible. Paralysis is visual, as are spasms and tremors. But there are many conditions that leave no external mark. Mental illness, chronic pain and disease can be entirely internal. You may not appear sick at all.

At first glance the line between a visible and invisible condition is quite clear. You fall under either one category or another. But someone with no physical markers for their medical state may use a wheelchair, making their condition visible. Braces bring visibility as do walkers and canes. Hearing aides can be visible or invisible, depending on the situation. And many people can fluctuate between the two categories, depending on which tools they need to get through the day.

My condition is invisible. Well, it is invisible to a stranger. Those who know me well might notice my drooping facial muscles, my unsteady gait, and my slurred speech. But even on my worst days, a passerby will most likely assume that I’m drunk as I stumble along.

My condition is invisible. But it has been forced to reveal itself for the past year. While my tinted glasses may masquerade as a somewhat questionable fashion statement, my mobility scooter and wheelchair do not. For the past year, my personal struggles have become overwhelmingly public.

At first I hated it. I felt so exposed. But then I got used to it. And while there are times that I crave to meet someone new without my literal baggage preceding me, I am generally at peace with the visibility. Because there are times when it’s really quite useful. Times when I get to skip the line, times when I get offered a seat on the bus. And these moments are bittersweet. The kindness that I receive from strangers come at a cost. But I have adjusted to paying the toll.

This week, when I left to go to the gym, I decided not to bring my walking poles. I figured that I didn’t have very far to walk, and it would give me an opportunity to work on my balance. So I arrived at the gym. There were a couple of people there, and none of them glanced twice in my direction. As I began cycling, I became aware that my eyes were burning. For some reason, I was close to tears.

In that flash of a moment, I felt so small. I knew what I looked like from the outside. Just a person. Strange, perhaps, wearing sunglasses indoors, but it was a sunny day. Someone walking slowly. Someone cycling for a relatively short amount of time, then getting off and slowly walking back to the elevator. No one of consequence, no one to remember. I felt invisible.

Later, when I realized why I had felt so upset, I grew appalled. Why should I care what impression I left on a couple of strangers? Am I really that self-centered? Do I crave the attention?

I decided to experiment. I was meeting a friend for an evening out, and I dressed up. I styled my hair, carefully donned make up, and wore my tinted contacts. I did not look sick. Not in the slightest.

I still had to bring my walking poles. I debated bringing only one, or perhaps not bringing them at all. But unfortunately, I am simply not strong enough for that at this point. I use the poles for balance, and by the end of an outing I often lean on them for support. But I still felt wonderful. I felt normal.

After wandering around for a while, we arrived at our destination. And faced three flights of stairs. There was an elevator, but someone had to come down from the third floor with a key in order for it to be used.

I stood there, waiting, as my friend ran up to fetch the key and others passed by on their way upstairs. Everyone that walked past smiled sympathetically, and most said hello, but that feeling of being small crept back. I was stuck at the foot of the stairs. Waiting.

There are differences between a visible illness and an invisible illness. Invisibility means that I can first make a friend, and later explain my medical situation. It means that strangers won’t give me sad smiles. But it also means that when I step on a bus, fatigued and in pain, but young with a healthy appearance, no one will offer me a seat. It means that when I attend a ceremony and am asked to rise, remaining seated will earn me eyes shoving against the back of my head.

That being said, it seems that ultimately, whether visible or not, the results are the same. First impressions may vary, but not how I feel observing them. I felt small because I am still new to this life. Not because I missed my ‘crutches’, or because strangers were overly sympathetic. I felt out of my depth in a new situation. And it scared me.

But that has nothing to do with appearance, nor with how others perceive me. Whether it is shown on the outside or brewing within, if it exists, it is a challenge. The same challenge with different packaging.

Visible or invisible? Kind of a trick question.

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  • doubtnichts says:

    I often wonder about this question too. Whether I would prefer my illness to be a visible on or like the fact that it is invisible. It’s nice to be able to escape from it. To appear normal and to not get judged based on my physical capabilities. But then again, when the pain is so bad or when I feel like I can’t stay vertical, it would be nice to have an outward appearance of it. If it were more visible, people would believe me when I say how horrible I feel. I wouldn’t have to fight so much. Even with doctors (which becomes troublesome when you have an invisible and rare disease).
    Despite all that, I don’t think I’m ready for visibility. I was terrified when I had to wear a heart monitor for a month and would have to actually show an outward indication that I may be sick. So I think in the end I prefer the invisibility?

    • First of all, thank you so much for reading and commenting. I completely agree that sometimes it’s nice to simply appear normal, but in situations where you need help or understanding it can be a bit detrimental. I have also had some difficult experiences with doctors, once I was actually mocked for claiming a high pain level. I guess it just didn’t show. I think the question of visibility/invisibility is one where the grass is not at all greener on the other side. Because neither situation is ideal, adjusting to one is enough of a challenge!

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