How living with MS has made me an illusionist

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by BioNews Staff |

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Five photos showing individuals with multiple sclerosis, who are sharing their real-life stories during MS Awareness Month, are hung with clips on a string above the words 'MS Community Spotlight.'
A headshot features a woman wearing glasses with orange lenses.

Ahna Crum wears glasses with orange lenses and prisms to correct for color discrepancy, contrast loss, and double vision. (Photos by Sarah Brewington)

Day 16 of 31

This is Ahna Crum’s story:

“A great deal of intelligence can be invested in ignorance when the need for illusion is deep.” — Saul Bellow

A photo of a woman standing still in her home is overlaid with semi-opaque images of her falling to the ground.

As an illusionist, Crum says she hid her struggles and only showed moments of stability in fear of judgment.

In regards to my relationships, I am an illusionist.  Illusionists’ performances have strength in misdirection and diverting the audience’s attention, masking the truth of what is happening. Illusions are very helpful when you have something you want to hide, and I have something I’ve tried very hard to conceal: multiple sclerosis (MS). I’ve been trying my best to blend in for the last decade.

Suffering from a chronic, progressive, and debilitating disease like MS teaches you to become an illusionist, showing the world only what you want them to see. The need for misdirection is borne of encounters with too many people who don’t understand or voice inaccurate judgments — but also simply for the reason that I, and many others like myself, don’t want to be defined solely by the disease. Too often, people with a chronic illness suffer in silence; our self-confidence can begin to wane over time as we fade into the background.

A headshot of a woman is edited to depict how she views the world. Only part of her face is in focus, and the coloring of that part appears more saturated.

This photo shows what Crum sees due to color discrepancy, double vision, and lack of contrast and focus.

Everything in my life has become calculated. Everything is staged. People see me on my good days. Seldom do they see the daily struggle. And they never see the days where I can’t even get out of bed. MS is unpredictable, but you can plan to an extent. People just don’t see the preparation or the aftermath.

The road of advocacy takes time, patience, and a lot of effort. I made a mistake and chose silence for security. I traded my voice for a disguise in an attempt to mask my disease, and I have become too comfortable on cruise control. I have been hiding on the sidelines, too practiced with illusions.

But I can’t stay quiet anymore. There is still such a pressing need for this disease to become better understood. I can continue to fear the backlash of someone else’s ignorance, or I can speak up. The more I, and others like myself, try to blend in, the longer this disease will remain invisible.

“One day everything will be well, that is our hope. Everything’s fine today, that is our illusion.” — Voltaire

In recognition of Multiple Sclerosis Awareness Month in March, the MS Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by MS, written in their own words. Follow us on Facebook, Instagram, and Pinterest for more stories like this, using the hashtag #MSSpotlight, or read the full series.