Save Your Pity, I Just Want to Be Treated Like You Would

“It is not your business what other people think about you.”

A wise professor once told me that in response to my being overly apologetic for having dietary restrictions while on a school trip abroad. My initial thought was (as I am sure yours may be as well), “How could it not be my business if it’s what other people think
about me?” But after reflecting on his statement a while longer and listening to his explanation, I quickly understood.

It is not our business what other people think of us. Whatever someone else thinks about us is really, truth be told, their issue. It’s their perception, their cognition, their rationalization and their conclusions. So is it really our job to change them? Are we, or should we be, required to take on that responsibility? The answer is only yours to make, and it my opinion, it boils down to this: Only if we want to.

I have sphincter of oddi dysfunction — something that cannot be seen when looking at me. Some days, I feel like a healthy, “normal” person. I wake up, work out, go to work, eat food, spend time with friends and family, walk my dog and go to bed. Sometimes I am even feeling so great that I endeavor to run a race and raise money to benefit other
individuals with disabilities. But, does that mean I am not disabled?

Other days, I cannot get out of bed. I cannot care for myself, eat, sleep, walk, stand, concentrate, communicate, go to work or even work from home because that requires all of the aforementioned activities. I am so ill and in so much pain that I cannot even manage to take the medications, or keep down the medications, meant to provide me with relief from my chronic symptoms.

Under the Americans with Disabilities Act, “disability”  is defined as — a physical or mental impairment that substantially limits one or more major life activities of such individual; a record of such an impairment; or being regarded as having such an impairment. 42 U.S. Code § 12102 (1). The law goes on to define “physical or mental
impairments,” “major life activities,” and “being regarded as having.”

“Major life activities” include, but are not limited to, “caring for oneself, performing manual tasks, seeing, hearing, eating, sleeping, walking, standing, lifting, bending, speaking, breathing, learning, reading, concentrating, thinking, communicating, and working.” 42 U.S. Code § 12102 (2).

Interestingly enough, the law takes into account other’s perceptions by defining “being regarded as having” but only if an individual has experienced an action that is in violation of the law. In other words, the law protects individuals with disabilities from the perceptions of others that have led to actions that have negatively impacted the individual and violated the law. 42 U.S. Code § 12102 (3).

Just because you cannot see something does not mean that it isn’t there. Unfortunately, one of the hardest things those of us with “hidden disability” struggle with is the perceptions of others. We wonder if our spouses or partners think we’re making excuses, if our bosses think we’re “full of it,” or if our friends talk about us when we’re not around. “She doesn’t even look sick! She ran a 5k yesterday! Why can’t she eat anything or have one drink?”

Someone asked me once if I thought it would be easier if others could see my SOD. My response was, “I have no idea.” Just because I may lament to my loved ones about how living with SOD while looking healthy is hard, that doesn’t mean that I am seeking pity or sympathy from all who see me. It also doesn’t mean that I am hoping people could have more empathy for my condition. All I am looking for at the moment of my lament is for someone who knows and loves me to listen.

I don’t think my life, my condition or my circumstance is any harder than the next person’s or anyone else’s. And quite frankly, I get quite frustrated when someone tells me I think otherwise. (And this happens more often than you would think.) For all I know, it may be so — and at the same time it may not.

We never know the magnitude of someone else’s challenges — for we cannot always see it — and it is theirs and theirs alone to carry. All we can do is try not think that we do. 

I speak for myself when I say I am not asking for pity or even your understanding. Because it is not my business what you may think about me — it’s yours. All I can do (and try to daily) is treat others the way I would want to be treated, and hope they can do the same for me in return.

Author’s note: The materials and legal definitions contained in this article are for informational purposes only and are not for the purpose of providing legal advice. You should contact am attorney to obtain advice with respect to any particular issue or problem.The opinions expressed in this article are the opinions of the individual author and may not reflect the opinions of the website or any other individuals.

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