Why Actions Don't 'Speak Louder Than Words' for Those With Chronic Illness

Everyday phrases, idioms, common sayings…call them what you will. The English language is “chock-full” of them: “blessing in disguise,” “a penny for your thoughts,” “every cloud has a silver lining”… I could go on and on. The words themselves sound rather innocent and (usually) the person speaking them has good intentions. In the past, my healthy self never realized that these phrases could have drastically different meanings to others. Not until I got sick with a chronic illness did my perspective change. The meanings of all of the aforementioned phrases have changed for me, but none so much as “actions speak louder than words.” Ironic, really, as I used to be a firm believer in the idea that people’s true intentions can be judged better by what they do than what they say. It was a phrase I recall my mother embedding into me as a child.

My Crohn’s disease was at its height in 2007 – only it was stealthily raring it’s ugly, vicious head, leaving every medical professional I encountered both perplexed and stumped. I was hospitalized eight times from New Year’s Eve to July. Often the hospitalizations lasted several nights…some over a week. I tried various specialists, the “best of the best” at just about every hospital in the city and suburbs of New York. No one had any real answers. “IBS. Always IBS” complicated by “diverticulitis…again and again. You’re the youngest any of us have seen. Fascinating…” Trust me, you never want a team of the “best” doctors to find your situation “fascinating.” Never ever.

2007 was also the start of the height of the “wedding season” of my life: I was 27. Most of my friends had found their person – and they wanted to celebrate! And I wanted to celebrate with them! Even I had met my person – although we didn’t know it quite yet. We spent one of our “firsts” rather unconventionally: Our first New Year’s Eve was also the first time he brought me to the hospital – for abdominal pain and bloody stools. Romantic, eh?

In the months and years since, there are countless significant events I’ve missed in not only my life, but the lives of my husband, family and friends. Parties, graduations, vacations, promotions, engagements, showers, bachelorette parties, weddings, babies, get-togethers, dinners out, nights in, relaxing spa days, not to mention countless work obligations…the list goes on. Even when I did muster the strength to attend, I wasn’t fun. I was in pain and anxious about how the event would go. I was disappointed I couldn’t be myself…my old self. At that time, I didn’t realize I’d already been permanently changed; I’d never be that person again.

I wanted to attend each and every one of those events with each and every fiber of my being. And every time I heard of one, I promised myself – and my loved one – I would be there for it. But most of the time, I wasn’t.

Most of my loved ones were understanding – most of the time. I know it was – and still is – frustrating for them to hear I couldn’t make an event that was monumental to them. An event I had committed to, but because I was having a bad day – which could mean any countless number of issues that I usually didn’t share details of – I wouldn’t be. Again. Eventually, I saw it in their eyes, I heard it between the lines of their words. I was even once told it directly: “Actions speak louder than words, you know”.

But, actually, they don’t. Not always. When your body is incapable of action, words are all you have. There are times, of course, when this phrase is true. Inspiring even. But, for me living with invisible illnesses, then and now, if people refuse to hear and believe my words as louder than my actions, well, then… I might as well be mute.

It took a few years, but eventually I did find the best doctors for me, and I had an official, correct diagnosis: Crohn’s Disease and fibromyalgia, as well as some mild depression and anxiety (who wouldn’t be anxious and depressed after all that?!). But, at that point, much of the damage had been done. The events were missed. The wedding season was over. Even the most compassionate loved ones were left a bit hurt and frustrated by my absences. I don’t blame them for that – never have, never will. I get it.

Living a life with chronic illness is hard, frustrating and messy. Not only for the patient but for their family and loved ones too. For me, I’ve learned that these everyday phrases can have very deep, hurtful meanings to others. Best to use them carefully, and probably not every day.

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