If you have a chronic illness, you need an elevator pitch.
You know what I’m talking about: the less than 60 second sound bite that explains you with your illness and how the world should deal with that knowledge. I didn’t think it was so difficult to come up with one.
The Pitch: I have rheumatoid arthritis, an autoimmune disease, involving inflammation of my joints, including those that keep my organs functioning, as well as chronic fatigue and pain. Essentially, my immune system is attacking itself and the only way to treat it is with medication aimed to reduce my immune system; the result being increased susceptibility to infection.
Pleased with myself, I shared this with my twenty-six year old daughter. She has fantastic neutral face. I wanted genuine feedback. I got it.
I may have explained my condition, but I left out the most important aspects of the perfect elevator pitch: what it means for others … in other words, why they should care and how they should relate to me.
Not to be dissuaded, I tried again. And, again. We were at it all afternoon. Turns out there’s a reason this isn’t as easy as it looks: it’s about seeing it from the other person’s perspective and we can all relate to how difficult that can be at times!
So here’s what I did: I got the clinical explanation out of the way as quickly as possible. It’s true, almost everyone has heard of arthritis. For the sake of a 60 second explanation, it really doesn’t matter that rheumatoid arthritis is like no other arthritis. I have to save that educational moment for another time.
Instead, I focused on what a person would see and what they would not see about my illness. Then, I worked out scripts people can use to interact with me.
For instance, I get tired easily, but at the same time I don’t want to miss anything (or let anyone down). If there is an understanding that I will do everything I can to avoid cancelling a get-together, appointment, deadline, or other scheduled event, and that I don’t want people to stop counting on me or start making allowances for me, then we have a starting point.
My daughter encouraged me to remember that there is limited mobility and strength which translates into asking for help opening water bottles on a regular basis. What is important is that I would prefer to ask for the help, as opposed to people pushing the assistance on me. If I promise to ask when I need it, we have a script we can all respect.
So, armed with these (and many more) examples, I tried my pitch again.
Pitch Take 2: I have rheumatoid arthritis. It’s an autoimmune disease affecting joints, including organs, and involves chronic fatigue, pain, and inflammation. I may have to ask for assistance opening a bottle, but I’m not afraid to do so. I may have to ask for your understanding if I cannot meet a deadline, but I’m not afraid to do so. I may have to ask for alone time when I’m overwhelmed with pain or lack of sleep, but I’m not afraid to do so. I’m more susceptible to infections because of the medication used to treat my disease, so do as you would with anyone else: don’t cough on me and please wash your hands regularly.
I want to live to the full extent that I am able to do so and that includes letting me try and fail things. What I want from you is not to do everything for me, nor to feel sorry for me. If I need help, I’ll ask, and if you can give it, all’s great.
If you have a question, definitely ask. When a person asks a question it’s a win-win: you get the information (hopefully) you’re looking for and the other person gets to give it to you. Such a simple exchange can mean more for developing understanding and fostering trust and respect than any one thing can do.
Just under 50 seconds.
It’s a work in progress, but I’m more convinced than ever that creating an elevator pitch and accompanying scripts for my chronic disease is an exercise that will pay off and then some.