My Favorite Way to Answer 'So, How Are You?' as Someone With Chronic Illness

Recently I have made an important discovery… and here it is:

To anyone other than me, the details about injections, drugs, latest conversations with the cardiologist and how my body has been reacting to the latest immuno-suppressant are totally boring. I watch as their eyes glaze over and the frozen expression of interest is carefully arranged on their face, in order to try and disguise the inner conversation they may be having with themselves about what to cook for dinner that evening.

And honestly, I really don’t blame people. Goodness knows I’ve done that exact same kind of thinking myself. I can’t deny that for a moment. I actually think it’s fair enough that they find my descriptions about how I’m really doing with my disease boring. It’s not happening to them. It’s not their body. My disease is my journey, it’s isolated and lonely, because I believe it can’t be otherwise — it’s my body. No one else travels around in it. Just me. And anyway, who would want to have an intimate conversational connection with my small blood vessels or gastrointestinal tract? I think that’s just kinda gross, and also a little bit weird.

People are now beginning to avoid the question, “So, how are you?” That was my first clue that I may need to modify my responses. So, I’ve managed to formulate a collection of responses that are more appropriate when they do accidently ask. I’m still perfecting these sentences, as I don’t want to outright lie about things in order to respect myself and what my life is really like. However, I’ve managed to stumble onto a real winner! And people love it. It goes like this: “A few struggles” (and here’s the clincher) “but trying to stay focused on the positive.”  

It’s fabulous, that bit. It’s kind of like offering them one of those floating orange and white rings they throw to people who have accidently found themselves in deep water and are struggling to get back out. A lifeline… that’s it. Throwing them a lifeline to help them get out of the quagmire they didn’t mean to get themselves into, but managed to when they said, “So… ah… how are you?” And honestly, it’s just lovely to see the look of relief flash across their face, as they frantically snatch at that lifesaver with desperate, clawed hands. “Oh goodness yes… oh well done… yes, it’s the way to go….you must stay positive.” Their relief is audible! And positive thinking seems so trendy right now — so “in.”

However, there is one exception to my new regime. Prednisone: steroid treatment is a total blessing for my inflammation pain, a curse for my weight gain. The thing is, I’m forced to take rather a lot of prednisone, and I’d probably be bedridden without it.

In any case, I simply can’t hide it, especially if I bump into people I haven’t seen for a year or two. Often they actually don’t recognize me. So in those instances, I feel compelled to try to explain my vast, and I do mean vast, change in appearance.

Unfortunately, I haven’t gotten that down pat yet. I tend to go into a babbled, over-complicated explanation about scleroderma, tests, antibody type… it’s like a runaway train getting faster and faster and increasingly more complicated until I’m totally screaming down that railway track with more and more information about the disease. Next thing I know I’m talking really loud and fast and seem to have found myself explaining my latest bout of hemorrhoids due to lower gastroenterological motility issues. All in order to justify why I’ve become what feels to me like a walking beach ball with a big round moon face for a head.

Or, to be a lot kinder to myself, all in order to justify why I’ve gained weight and don’t look like I thought I would at almost 50.

I guess I’ll have to work on that one. I’m thinking the place to begin might be to learn to accept that my appearance doesn’t actually mean everyone will judge it as harshly as I do.

Not “positive thinking” — just good thoughts. There is a big difference.

Follow this journey on Kim Tocker.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

*Sign up for our Chronic Illness Newsletter*

Find this story helpful? Share it with someone you care about.

Related to Scleroderma

To the People Who Think My Chemo Isn’t ‘Real’

When you hear the word “chemotherapy,” what immediately comes to mind? Cancer. Bald. Nausea. Vomiting. Infusions. Sterility.  Upon hearing that word, most people jump to the same conclusions with the same general consensus on how chemo works, who receives it and what side effects it has on the body. The truth is, chemotherapy isn’t just [...]

When Your Full-Time Job Becomes 'Professional Patient'

As I sit in an uncomfortable waiting room chair, I look down at my new patient paper work. The pages and pages of information to fill out seem identical to every other physician’s office on the planet. These fill-in-the blank forms have become so second nature to me I barley have to think as I [...]

When Facebook Said Her Face Would Receive 'High Negative Feedback'

It’d been years since Lisa Goodman-Helfand publicly shared a photograph of her bare face. Goodman-Helfand, 40, lives with scleroderma, an autoimmune disease that can cause skin disfiguration. As a result, her skin is covered in red blotches. She always took care to conceal how her disease affected her looks — until she connected with Chanel White, another woman [...]

What You May Be Missing When You Compare These 2 Faces

When you look at these two pictures, what immediately runs through your mind? I’m guessing words like beautiful, young, healthy and vibrant were adjectives that popped into your head when you viewed the woman on the left. Does seeing the woman on the right conjure up words like sick, contagious, repulsive, ugly and scary? Our brains make [...]