Just because I can lift it, doesn’t mean it’s not heavy

by Carolyn Thomas   ❤️   Heart Sisters (on Blue Sky)

During a recent visit, Ben and Paula (my son and daughter-in-law) asked what kind of family birthday celebration I would like this weekend. My answer is always a non-answer, really. “All I want for my birthday is time spent with my kids and grandkids!”   We agreed on a backyard barbecue in Ben and Paula’s beautiful garden – and it was a perfect springtime distraction from what’s been happening for the past month around here.

Yet like many of my friends, birthdays can also bring new health issues we didn’t see coming. Currently, mine include:

♥ refractory angina (since 2008): daily chest pain that does not respond to typical meds or procedures – but which I’m now able to manage pretty well thanks to my nitro spray,  (“NITRO IS YOUR FRIEND!”)  – diagnosed four months after surviving a misdiagnosed “widow maker” heart attack, and most likely linked to a secondary cardiac diagnosis called coronary microvascular disease)

♥ osteoarthritis (since 2022): gradually making its painful way from joint to joint, currently my left knee, right wrist, both gnarly index fingers and the three smallest toes on my right foot)

♥ breast cancer (since April 1, 2025):  Invasive Ductal Carcinoma, newly diagnosed and currently awaiting the“urgent MRI” requisitioned by my breast cancer surgeon. Conflicting test results  (the ultrasound test reported a relatively small tumor, but the radiologist’s notes disagreed). My first pre-op  appointment with my surgeon this week started well with a Stage 1 assessment, but within an hour, Stage 1 had been bumped to Stage 2 until proven otherwise by the results of that “urgent MRI”.

My point here is that few of us can tell just by looking at a person what’s going on in their lives, or if they are suffering or not. Even the sickest among us can often look surprisingly “normal”.

I once heard a conference speaker talking about the topic of personal suffering. Wouldn’t it be useful, she asked her audience, if the  people we see every day had little signs pinned to their jackets telling the rest of us what they were going through? If we knew they were having a particularly bad day (or a bad year), maybe we’d try to be nicer to them?

The reality, she then explained, is that each of us does have  these little signs – but they are invisible.

So we can’t tell who is suffering from what on any given day, because we so often paste on our pleasant smiley-faces as if all is right with the world – even when that’s not quite correct.  If those little signs were visible, we’d know who was suffering one or more crises, like:

• My husband lost his job. . .
  
• My teenager’s on drugs. . .
• My Mum’s been diagnosed with dementia. .
• My dog died last week. . .

Christine Miserandino (who has lived with debilitating lupus and fibromyalgia for many years) taught us this lesson on her aptly named website called But You Don’t Look Sick –  especially her classic Spoon Theory essay. It’s a must-read if you have family or friends living with any serious chronic condition.

She brilliantly describes explaining to a girlfriend one day how overwhelming it can feel to live with a chronic condition that’s invisible to the world. Even knowing that Christine had been very ill since their college days together, her friend hadn’t appreciated how much exhausting effort even routine daily activities can require.

So while chatting in their favourite diner one day, Christine handed her a dozen spoons  – and then slowly began taking back the spoons, one by one, each representing a simple task. Taking a shower?  Christine took away one spoon.  Getting dressed? One more spoon gone. Running late?  Yet another spoon.

Christine’s friend was shocked by how quickly those 12 spoons disappeared, illustrating the increasing exhaustion Christine would feel as every day wore on  – until she was “out of spoons”.

Christine’s fans who identify with her clever analogy call themselves “Spoonies”.  They’ve learned that they have to carefully plan each day – sometimes each hour of each day – to protect their health. I call these “one-outing days” or “two-outing days” or (rarely!) “three-outing days”.

I love spending time with my grandkids, but I know that one hour of playtime with our four-year old Zachary, for example, may qualify as a “12-spoon three-outing” day”  for me! That sweet little boy never stops! So I need to plan accordingly – sometimes even a wee lie-down before and after each outing.

“Just because I can lift it, doesn’t mean it’s not heavy” is a truism about chronic illness that I’ve heard from many people over the years, including from Newfoundland’s Lisa Walters, who blogs at Damsel In A Dress . She lives with a chronic medical condition called Ehlers-Danlos Syndrome (EDS), a debilitating genetic diagnosis that weakens the body’s connective tissues.

I’ve read about EDS – but I didn’t really know much about this condition until I learned from people sharing their own real life stories about what it’s actually like to live with this diagnosis.

Marina, for example, told her story about a decades-long search for an accurate diagnosis of her own distressing symptoms. These included crushing fatigue, joint instability, brain fog, chronic pain and decreased mobility. As Marina explained:

“It wasn’t until I retired from the military and was assigned the Pain Management & Rehabilitation services at my local Veterans Affairs Hospital that I was finally diagnosed with Ehlers-Danlos syndrome at the age of 48.”

Think about that last sentence.

We may not know Marina personally, but we immediately know that, until she retired after decades in the military, she did not know what was wrong with her body – yet she still went to work feeling sick.  And she likely went to work feeling significantly worse than most people feel when they call in sick so they don’t have to go to work.

Countless people diagnosed with chronic illnesses do the same every day – each sporting their own unique yet invisible signs.

Elephant image: Bernhard Stärck at Pixabay

♥

Q:  Do you try to convince others that you feel better than you actually do?

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NOTE FROM CAROLYN:  I wrote much more about invisible illness in my book, “A Woman’s Guide to Living with Heart Disease”  (Johns Hopkins University Press). You can ask for it at your local library or bookshop (please support your favourite independent neighbourhood booksellers, or order it online (paperback, hardcover or e-book) at Amazon – or order it directly from my publisher, Johns Hopkins University Press (use their code HTWN to save 30% off the list price).