Living with an invisible illness

The person introducing me mentioned among other things that I was diagnosed with lupus over thirty years ago. At the conclusion of the introduction, I walked up onto the stage. I had taken time to dress for the event- black suit with black above the knee skirt. Black jacket with shiny gold buttons, black tights and pumps and a beautiful velvet scarf (my professional attire). Four hundred pairs of eyes watched me mount the steps and stand behind the podium (good news, I didn’t trip!). I adjusted the microphone and my first words to the audience were, “As I walked up here today how many of you said to yourselves ‘She doesn’t look sick’”? Hands all over the auditorium shot up.

The other day I was reading a blog and someone posted, “What do you wear to doctor’s appointments?” Being one to like dressing for special occasions (remember I’m an accessory addict!) and thinking perhaps I’d been missing this special occasion to dress up, I read on. No, the writers’ point wasn’t about dressing up for the occasion (drats, there go the accessories) it was about dressing down and not looking so good so that her doctor would not think she was sick. Many people commented that they wore sweat pants and no makeup to their appointments in order to be taken seriously. I must admit, I’ve never deliberately dressed down for a doctor’s appointment, but I have thrown on the most comfortable and convenient clothing when feeling poorly, simply because that was all the energy I’ve had. Digging through that accessory drawer on those days was just too much effort! This online discussion did get me thinking, however.

Having an illness that isn’t readily visible to the world is a bit of a mixed blessing. Yes, it is great to be able to put on my accessories and forget about it on good days. These are my big necklace and cuff bracelet days- dripping from head to toe in accessories all the way down to my gold glitter sandals! My outfit simply screams I’m feeling good today. I just have more fun dressing when I feel good. But, I did understand the blog question because people often equate looking good to feeling good and not needing medical attention or support. When you live for many years with an illness and if you are like me and tend not to focus on it, other people may not understand the seriousness of what you are going through. In my case, looking and feeling my best requires a medicine shelf full of meds, IV infusions and other procedures. But, if I passed you on the street you’d have no idea what lurked behind the accessories.

Just because you can’t see it doesn’t mean it isn’t there, or potentially life-threatening.

Yes, invisible illness is a double-edged sword, because people who do not live with it do not always understand it well enough to know how serious it can be. This can create a negative spiral because the person with the illness is hesitant to share when often the comment ” you don’t look sick” is the response. Although often well meaning, this response feels like it negates the seriousness of the illness. Invisible doesn’t mean imaginary--just because you can’t see it, it doesn’t mean it isn’t there, or potentially life-threatening. Besides, how in the world do you respond to the statement, “but you don’t look sick”?

By not sharing that we have an invisible illness, fewer people are aware the disease exists and less funding is put towards finding the causes and cures. See how quickly this downward spiral can hinder research, new medications and patient support? You can see the dilemma that occurs when an illness is invisible and compounded by patient silence. I can tell you that tucked away behind my smile and my gypsy like accessories is a village of healthcare professionals helping make my smile possible. When looking our best, the issue becomes getting the much needed support and understanding of friends, family members, doctors and funders, so that everyone impacted by these invisible diseases can live the highest quality of life possible. I think the blogger was simply asking should the severity of what was going on on the inside of her body be reflected in the way she dressed on the outside, so that others would understand a bit better how she felt. To me, that question has no easy answer…. only personal choice.

Today is a good day for me and I hear a giant necklace in my drawer calling. I can assure you of one thing….my illness might be invisible, but at five feet ten inches covered in large and bold accessories I never will be!

This piece was originally published on Cindy Coney's website at cindyconey.com.