Opening Words from Sun. February 19 by Arkay Adkisson

Good Morning.

How are you? Those are three simple words that we ask almost everyone we encounter. But when you ask this of a person with an invisible disability or illness, this conversation starter can fill us with intense dread.

If I answer honestly, I may be telling you about the intense pain, emotional distress, and alienating situations that are on my mind at the moment.

Sometimes, in order to simplify the situation, I lie. Obviously this contradicts my personal ethics, but the alternative can be exhausting for everyone.

When you say, “You look good, you must be feeling good today!”, I know you don’t understand what invisible illness is.

We may look good. I may be having a good moment, or more likely, in my case here on a Sunday, I have saved up all the forced energy and fake plastic emotions I can in order to lubricate the social situation.

Many times people ask me if I am “getting better”. Many invisible disabilities are genetic, degenerative conditions, which means that even though we may find treatments that can help us feel better for a while, or deal with some of our symptoms, we will not get better, in fact, we will continue to get worse.

I’d like to tell you a story about a housewife. Not a housewife like me, and probably not like any housewife you know, but one of the REAL HOUSEWIVES. In the last few years Yolanda Hadid has been very open and transparent about her battle with a chronic invisible illness called Lyme Disease. While she spent the majority of her time chronicling her illness, treatments, doctors appointments, specialists visits, copious medications she took, fatigue, and pain; I’d like to tell you about one time she took to share what appeared to be a good moment in her life. While on vacation with her husband, she shared pictures on social media where she appeared to be happy and enjoying herself. This simple act fueled an entire season of drama, and her friends, coworkers, and community accusing her of having a mental illness called Munchausen, in which a person fakes or induces physical illness for attention. They simply couldn’t believe that someone who was so sick, could have a good day, good vacation, or look that good. THESE are some of the struggles of having an invisible illness. How much do I share, and if I’m having a good day will people think I’ve been faking my disability. If you think this is just television drama, I will tell you that three separate people in my life have been accused of faking their debilitating genetic diseases and instead having Munchausen. This IS a real life problem.

Returning to the phrase “How are you?”…I know no one is trying to be judgmental, or induce an existential crisis in me over how to answer, so I offer you this simple solution.

Open your conversation with intent. Instead of asking, “How are you?”, say what you really mean, which more often than not is…I’m so happy to see you today! or…”I haven’t see you in a while and you have been on my mind, I’m here if you want to share, do you have a moment to chat?”

Speaking with intention, not only helps the more than 30 million Americans with invisible disabilities navigate social mores, but helps everyone to live a more intentioned, empathetic, and purposeful life.

Thank you.

NOTE: The ideas and opinions in this post do not necessarily express the thoughts or opinions of the Ethical Society of St. Louis or its leadership.