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The 'Baggage' That Comes With Chronic Illness

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My husband pulled out my suitcase, and I got to work filling it with clothes, meds, toiletries, pain relieving paraphernalia, etc. One suitcase became two. One small carry-on was exchanged for a larger one. And let’s not forget my purse. I was leaving for an extended trip, by myself, with luggage I couldn’t carry alone, and personal baggage strapped to my shoulders.

I have baggage. Can you see it?

When people hear the phrase, “I have baggage,” they may think of the typical movie cliche of the single parent trying to make ends meet while looking for love with someone willing to help carry the load. That is a narrow but true view of the concept. My baggage affects every relationship including spouses, children, extended family, friends and even strangers I meet along the way.

My baggage is complicated. Lighter on some days, impossible to lift on others. It grows as my health status becomes more complicated and doctors add on diagnoses and treatments. However, my baggage also carries souvenirs of wonderful memories, lessons learned, struggles overcome and deeper relationships.

People can add to the weight of my baggage. Sometimes purposefully by trying to pry it off me with accusations of faking the pain or that I’m not doing what they think I should be doing to get better. They believe I can simply remove it and set it aside. Chronic disease baggage doesn’t work that way.

Sometimes people unintentionally add to the weight by being too afraid of it so they run by avoiding contact with me. Or they are careless with words or actions that knock over my baggage leaving me with a bigger mess to clean up. It’s accidental, so I can usually move past it.

We all have baggage. Some heavy, some light. Some easy to see, some hidden. Some in complete disarray. Others colorfully decorated with stickers from their many life travels. Some can be let go. Some can’t. If only we could more easily recognize each other’s bags filled with good and bad, treasures and pain, and be a little kinder because of them.

I am three weeks back home and still recovering from that extended trip. It was both wonderful and terrible. But treasures were stored.

My husband, who also carries baggage, is preparing for his next trip without me. He will pack his carry-on and his baggage will change. The day to day home chores will temporarily cease, but his concerns will grow. Will I be alright without him for the week? Will I stay healthy enough? Will our kids be able to handle things without him directly on hand? These concerns will weigh him down. Please understand, the baggage I carry he also carries.

Can you help me with my baggage? Yes. Learn about my health challenges: lupus, fibromyalgia, ITP, lupus anti-coagulant and trigeminal neuralgia. There are many resources. And not just the nuts and bolts of WebMD. I mean the day to day living with chronic pain, intense fatigue, brain fog, medication side effects and so much more. Learn about the good stuff too, like how to gently make the most of the good days and focus on the positives while tending to the negatives.

Please don’t try to take my baggage from me. Recognize it has become a part of me. If you try to take it you make me a burden unto yourself, and that can destroy our relationship.

A little kindness can alleviate the weight. A smile, a word, a card. A visit like the one I had recently that will sustain me for weeks. Simple things can make life so much lighter.

Originally published: April 4, 2018
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