Chronic Illness and Shame

​There is one question I used to dread. One simple question which evoked humiliation, shame, and a feeling of hopeless inadequacy. It was the most average question in the world. It was a trite remark in the repertoire of small talk and easy conversation starters:

"What did you do today?"

For most, this is a simple question which can be followed by a simple answer:

• I had a productive day at work, then came home, cooked and did the dishes.
• I had an awesome time! We went to the beach; the weather was amazing!
• Nothing much, I spent the day picking up groceries and watching the kids.

It doesn’t require sugarcoating or deep thinking, it just requires you to reflect and recount what happened. But, what if nothing happened? What if your day was occupied with…nothing? What if you didn’t even leave the house, or in fact, your bed? So when you hear your friend ask that painfully simple and trivial question, you pause, you reflect, and then you think: “How do I avoid the shameful truth?”

The truth is this:

I woke up with the overwhelming feeling of being hung over, despite never having consumed any alcohol. I woke with that feeling of persistent, mind-spinning exhaustion that never washes away.  And then I waited. I listened to the sounds of the world waking up all around me: the relentless barking of the neighbours’ trapped dog, the cheerful natter of school children tottering to school, and the spluttering and coughing of car engines starting up. And I still waited. I waited until it all passed me by and there was peace again; everyone had started their day.  People were being productive elsewhere, outside the home in their other worlds. Slowly, deliberately, I walked down the stairs and into the kitchen, where I prepared my gluten-free oatmeal with banana slices, stopping every so often to sit down, hoping for the kitchen to stop spinning around and around. After breakfast, I returned to my bedroom where I began the lengthy task of taking all my supplements and medications. One glass of water: 5 pills. A second glass of water: 5 pills.  A third glass of water: 5 pills. Then, I got back into bed and waited for the foul, lingering impression of the capsules to disappear and for the overwhelming nausea to slowly evaporate. At this point, I was exhausted, and so, I waited. After some time, I worked up the energy to have a shower and to change my clothes. This was the day’s feat, the mountain to climb, my biggest exploit before dinner. The interludes between sleeping and eating were filled with deliberate pacing techniques: after I shower, I will rest; after I read a chapter of this book, I will deliberately rest my brain in an effort to relieve this  pressure headache; after I eat, I will wait an hour and then I will take all my supplements and medications once more.

The real question is: “How do I reveal my truth without making the world uncomfortable?”

Many sufferers of chronic illness do not have the opportunity to go out and get drunk, or to climb mountains, or to work a productive 9 am-5 pm schedule. We are often compelled to spend our day doing very little. In fact, to the average able-bodied person, our days might appear to be filled by nothing. If we say the truth: “I spent the day in bed”, there is an awkward silence, often followed by some pitiful sound and the words: “I hope you get better soon.” In response to this banal expression, dare we add yet another, even more chilling truth: “I might never get better.”

The truth, although it may seem incredibly painful and humiliating, is far more powerful than any sugarcoated lie. My truth may only seem shameful because it is different from that of the majority. We are taught to conceal our weaknesses and limitations. We are in fact taught that physical or mental weakness is simply bad and by extension unlovable. As a society, we believe that bravery is equal to grand acts of unparalleled heroism, when in fact, true bravery lies in the shameless revelation of one’s own truth. So, the next time someone asks:

“What did you do today?”

You may answer: “I spent the day healing.” Because we are not doing nothing; we are giving our body the rest it needs and deserves in order to be able to heal. And this is a tremendous act.