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

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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 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.

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Originally published: April 12, 2016
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