It’s Complicated – Working with an Autoimmune Disease

When I went to my local library and typed in “autoimmune disease” in the keyword search (I miss card catalogs, by the way), a dozen books were listed.

12 books. And one of them had to do with pet health.

That’s how I discovered Women, Work, and Autoimmune Disease written by Rosalind Joffe and Joan Friedlander.

Both authors live with autoimmune diseases. They’ve been there – dealing with the uncertainties that come with living with an autoimmune disease, the unpredictability, the sheer will it sometimes takes just to get through the day.

But, there were many times I came close to not finishing the book. 

It was written in an overly simplistic, just-keep-going and make-some-changes kind of way. And that doesn’t work for everyone. 

For my readers who don’t know, I was an elementary school teacher, before retiring due to a disability. I taught for 12 years. I had planned on teaching for many more. But teaching doesn’t provide many opportunities for flexible work hours or workplace modifications (topics discussed in this book). 

However, even though I didn’t particularly like this book, I did find passages that caused me to pause for a moment and think, “Exactly.” 

This week I’d like to share these passages with you.

“Autoimmune diseases are fickle, and what might adversely impact your symptoms one day might not affect you the next.”

“It takes determination to look at deceasing possibilities and refuse to crumble. It takes courage to face the loss of what you could do and see opportunity in its place.” 

“Grief is an emotion that is often overlooked when talking about chronic illness, but it is critical to any discussion about living with AD – with translates into learning to live with loss. That’s not to say that there aren’t gains here, too. But loss is inevitable, even at the basic level of not being able to do or feel as you once did.”

“The truth is that no one knows what’s around the corner, but living with chronic illness means that unpredictable health is more likely.”

“On the days when you feel your worst, you can look fine. You don’t sport the red nose of a cold or the cast of a broken wrist to support your case. Because you look the same as you do on your good days, you wonder if people understand the symptoms that they cannot see.”

“It’s undeniably true: your illness has changed the way you view your world and your life. It has quite literally transformed your physical capabilities – at least for the short term – and has most likely altered your perception of yourself.”