So, I have been sitting around all week, sick with the flu/cold/crud, coughing incessantly. Yuck. Our dog keeps looking at me, as if to say, “Why are you barking all the time?” Now he knows how WE feel.
Whenever I am sick, I think about people who are living with chronic illness. Or any illness, for that matter. I think about them because here I am, feeling unwell all day, for just several days. Imagine feeling unwell every day. Or most days. Imagine being in pain most of the time.
There have been periods of time in my life in which I have experienced this. I had regular migraines for several years. I had chronic pelvic and hip pain throughout my late teens and twenties. I remember being surprised at the emotional aspect of pain, one that no one talked about, but was always there. Frustration, joy, sadness, anger, gratitude, hope, hate.
I am certainly not comparing these experiences to others’. But the fact that we all experience illness and pain, in different degrees, does give us perspective, and perhaps a foundation for empathy, in trying to understand the experience of illness and pain. It is a universal human experience.
When I think about illness and pain, I am struck by the often disregarded emotional aspect. I am made aware of this, not just through my own human experience of pain and illness, but through the many people I have sat with who are ill and in pain.
There are so many emotions you hear when you are with people who are unwell. Some are clearly articulated. And some are just under the surface when people are struggling to appear “normal”. The emotions of feeling weak. The sadness and loss of not being able to do the things you want. The anger and gratitude of dependence on others. The overall emotional energy it takes to function. The joy in moments when you feel GOOD.
And, I think about how we do not really, truly take into consideration this emotional aspect of not being well. Of course, there are overall concerns about our lack of attention to mental health. A lack of attention to depression and anxiety, and other conditions. But I’m talking about more than that. I mean the everyday, wide and deep, emotional experience of being unwell.
I am concerned about how/whether we are aware of, and attending to, the emotional experiences of people who are ill and in pain who are growing older, who are growing with dementia, who are living in long-term care communities, who are living in our neighborhoods. How much of this emotional experience of being unwell is even considered in how we see them, how we interact with them, what we ask of them, and how we can better support them. I mean, especially for people living in nursing homes, nearly every person is there because they are living with an illness. And, for many of them, they are feeling unwell. Certainly, this has got to color their whole world. But are we in the same world with them?
I can remember working in nursing homes and assisted living communities, and inviting people to join some group activity. It is such a normal interaction in these settings – my job is to convince this person to be involved in activities (benevolently) and I expect I will be met with some level of misgiving. And I remember having these almost existential moments in which I would see myself asking an elder, 96 years old, with severe arthritis, nearly blind from cataracts, to join in the trivia group. On so many levels, it became strange. But I would every so often wonder, how does she have the emotional strength to do this? To get up every day. To keep going. And now I am asking her to be a part of a trivia group. What am I doing? Is this okay? I want to help her. But am I making it harder for her? Am I making her dig even deeper into her well of emotional strength to come to this game? Are there other things she would spend that emotional currency on?
Do we really acknowledge the everyday emotional experience of being unwell, in the sense that this is an experience that likely underlies everything in a person’s world, and perhaps influences every aspect of their living? And how is this manifested in our everyday interactions with them? Are we aware of how much it is there, this emotional undercurrent?
Wendy Lustbader, who I am proud to consider a part of my world, wrote this amazing book called “Counting on Kindness: The Dilemmas of Dependency”. In it she says:
“Those who have had their wings clipped by illness or old age feel the need to do something “crazy” to remind themselves that they are still able to exert influence, if only over their own domain or their own body. This need conflicts with their feeling obliged to give full cooperation to their caregivers. When other means of repayment are lacking, compliance does become the only resource that can be exchanged for sustenance. Those with personality styles that prevent their squelching themselves in this manner lack even the power of compliance. Instead, they turn their helplessness into its reverse, commanding their helpers to follow their exact specifications and blasting their helpers with anger when their directives are not heeded.” (page 21)
Maybe this is how the emotional experience of people who are unwell manifests sometimes. In demanding autonomy. On some level. On levels that seem small to us, but are not small.
Or maybe it looks like this:
“Mustering the courage to usurp gloom is not a once-and-for-all attainment. No sooner do we become accustomed to one set of conditions than illness imposes others. We have to keep devising satisfactions and then releasing our hold on them. Swinging from gratitude to bitterness and back again, the cycle moves with a fierce complexity. We either acquire enough flexibility to open ourselves to new consolations, or bitterness prevails.” (page 42)
Perhaps, then, what we see is, “I don’t understand. She liked going on walks last week. Now she yelled at me this morning when I said I was ready for our walk, and this afternoon she asked me to go with her outside.”
So, what is there to do?
I am not suggesting that we need to break into the emotional world of others, to feel what they feel, to expect they tell us what is happening in their heart and mind. To “fix it”. I am not sure that is for us to do. We do have to listen for it, though.
We have to honor that there is an emotional experience of being unwell. It is likely larger than we know. It is complex. It is not all negative. And, as for all of us, this emotional world in us is so deeply and personally a part of us. To not acknowledge it is to not acknowledge another universal human experience. And that can lead us to DE-humanizing.
The lovely artwork in this post is from Gerd Altmann.