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How My Invisible Illness Made Interactions Difficult Over the Holidays

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Many people with chronic illness tend to look to the Christmas holiday season with trepidation. This can sometimes be because we can foresee being pushed beyond our means – feeling like we have to socialize with family and friends, go to events, travel or host visitors. It can also be quite a lonely and somber period for some as we reflect on another year of being ill or the challenges we’ve faced. I knew this Christmas was not going to be easy in many ways, as I have spent the last three years unwell with a tick-borne disease; however, I found myself more acutely aware of my trying interactions.

Firstly, there are two questions I seem to dread more than any other these days: “How are you?” and “What have you been up to?” Sure it’s nice to be asked, as some people don’t even bother, but sadly, in Aussie culture in particular, it is rather expected that this be met with a quick and positive response. When first greeting someone and they casually ask, “How are you?” I find myself replying “Good!” before my brain has time to compute. Wait… what… I’m not good!

When family and friends enquire into what I’ve been doing over the past year I genuinely never quite know how to respond. I mean, they assume you must be better by now… right? I have a habit of responding in a rather soft manner like “I haven’t been up to too much unfortunately as I’m still quite unwell” (despite the many appointments, treatments, trips to the pharmacy and necessary self-care, that is). I usually try to give more information, as I want to connect with people and raise awareness of tick-borne illness, so I often mention something about still being on antibiotic treatment. Usually I get a generic reply of “Aw, that’s not good” and I move the conversation back to asking them more about themselves.

But the most common reaction I seem to get without a doubt is a certain facial expression that sticks in my mind like glue. I would say the expression resembles discomfort and confusion, teamed with awkwardness, with an overwhelming sense that they want to bolt. It’s at this point that I often decide it’s best not to go into any more detail about what my illness is actually like. Occasionally I wish people would ask more questions about the taboo aspects of illness because gosh that would make us feel a lot less lonely in this world.

Secondly, within two days of catching up with old family friends, I had received two somewhat different comments on my appearance. Let’s face it, generally people love to observe and comment on how others have changed since the last time they’ve seen them. When leaving a family friend’s house over the holidays, she said to me with good intent, “You look good. I hope you’ve been keeping well.” She knows I am not well but it’s almost as if my appearance on that day had fooled her! Sigh… invisible illness, am I right? Most people would love to hear that they look great but I just felt misunderstood ‘cause I definitely don’t feel great!

Then, the following day, another family friend commented that I had lost a lot of weight. While I haven’t lost  “a lot,” I didn’t have much to lose in the first place. Often people with chronic illness experience weight fluctuations and it can be a source of anxiety in many. I’ve lost weight because my health has deteriorated again and a number of medications cause me to lose my appetite. I’ve lost even more muscle, which makes me look frail, like a shell of my former self. But wait… yesterday I was told I look good!? That’s the thing about tick borne disease – you rarely look as wretched as you feel, and you can often mask it with a bit of make-up and a forced smile. I would much rather be asked how I’m feeling then it being assumed on how I do or do not look.

Lastly, as I reflected on my disappointment regarding the reaction of others towards my illness, I once again thought about what I would like to hear from people. And this is it: “That must be so difficult for you but you’re very strong to face it each and every day. Is there anything I can do for you?” These two sentences could make the world of difference for someone who is struggling! Moreover, why not research about their disease or show interest in their treatment plan? My mum often says to me that people react the way they do because they don’t know what they can say. Well, I believe anything along those lines is a good start! Rarely do people with chronic illness want advice or pity but we do want to feel like our illness is recognized and that we are worthy of care and love from those around us.

So, if you’ve had some tough conversations over this holiday period, please know you’re definitely not alone. And well done for getting through those interactions with grace, like I know us chronic illness warriors are all too used to doing.

Phew, holidays are over now!

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Originally published: January 5, 2018
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