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The hidden world of chronic disease

Susan J. Baumgaertel, MD
Conditions
September 25, 2022
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Sometimes hiding things can work to our advantage: an early pregnancy, a disfiguring scar, public speaking anxiety … Easter eggs! But, more often, they are just temporarily hidden from public view, and, in the grand scheme of things, it can actually be a relief when they are “found.”

Enter the world of chronic disease, and things rapidly become much more complex. Chronic disease can often become manifest without any external visual signs, such that nobody really can tell what others may be experiencing.

And that, right there, is at the heart of the matter.

So many chronic health conditions come with baggage – pain, fatigue, work disruption, and social impacts, to name just a few. Family dynamics are also often profoundly impacted.

The obvious conditions are from general disciplines familiar to most:

  • endocrine: diabetes, thyroid disorders
  • cardiovascular: heart disease, peripheral vascular disease, arrhythmias
  • neurologic: Parkinson’s, multiple sclerosis, dementia, stroke, migraines
  • rheumatologic and autoimmune: rheumatoid arthritis, lupus, osteoarthritis, inflammatory bowel disease
  • psychiatric: depression, anxiety, bipolar disorder, ADD

And the above group of conditions just serves as an example from a much longer list.

Here’s where menopause sneaks into the picture for most women. The hormonal journey starts long before “12 months without a period.” And postmenopause essentially continues until the end of life.

Is menopause a disease?

Absolutely not!

For most, it is a natural transition women go through during their life journeys. Yet, it has many characteristics that mimic chronic illness – especially often the hidden parts:

  • The trip from pre- to post-menopause typically spans many years and sometimes more than a decade.
  • Many symptoms can be intrusive, hard to manage, impact daily life, impair mental and physical well-being, and sometimes are misunderstood.
  • Medical care is often sought, and not just from Western medicine.
  • Even in our current era, talking about menopausal symptoms can almost be taboo in some social circles and workplaces.
  • And – as if adding insult to injury – the incidence of other chronic diseases increases in the postmenopausal state.

But, back to the hidden part.

I will never forget one day when I was rounding in the hospital on-call, seeing patients on the cardiac telemetry unit. I was about seven months pregnant (very visibly so) and had arrived at the nursing station to write a few notes. I glanced around but couldn’t see any open chairs.

A lovely nurse leaped to his feet and offered his chair to me, much to the relief of my aching feet. The kindness didn’t stop there, however, as the same nurse dashed over to the staff break room and brought me some Jell-O. When I left the hospital a bit later on the way to my car to drive to work, I recall someone holding the door open for me.

Fast forward to now. I have had a chronic illness – rheumatoid arthritis – for 22 years. Nobody offers me a chair or some Jell-O or opens the door for me with the same courtesy as when I was in my third trimester. My feet are constantly on fire, and I always struggle with door handles – good thing I don’t like Jell-O!

My chronic disease is not really visible. The struggle is real for so many others too. And, if we lump menopause into this category, it becomes quite clear that most women will experience some version of chronic “illness” even while enjoying perfect health.

I truly believe the onus is on BOTH sides to be more transparent and accommodating. Let’s strive for more kindness (I always try to hold the door open for others) and understanding, even if – and especially if – there are no visual cues that someone else may be having a difficult time.

More importantly, let’s work on demystifying the menopausal journey and make it normal to talk and ask about it. We should feel free to share knowledge, ask and answer questions, and strive for supportive and nurturing environments.

It feels good to be seen – and heard!

Susan J. Baumgaertel is an internal medicine physician.

Image credit: Shutterstock.com

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