Category: resilience

Other people’s words about … loneliness

She had told herself more than once not to call it loneliness, since it wasn’t any different from one year to the next, it was just how her body felt, like hungry or tired, except it was always there, always the same. Now and again she had distracted herself from it for a while. And it always came back and felt worse.

from ‘Lila‘
by Marilynne Robinson

A couple of years ago, I began to experience recurrent bouts of unexplained nausea. The waves of sickness came every three or four weeks, and left me feeling depleted and frustrated. My symptoms of illness were made more difficult by the fear that accompanied them: a fear that I’ve touched on here and here, and will no doubt touch on again.

In her memoir Slipstream, Elizabeth Jane Howard mentions in passing a phase in her life, when she was a young woman, during which she experienced something like this.

In those days, I had bouts of being unable to eat that sometimes lasted for weeks. This seemed to be one of them. I was very tired from my illness, but encouragement to build up my strength by these kindly people was of no avail. I’d sit before an immense juicy steak and delicious salad, trying to swallow the first pieces of meat, my stomach heaving, and wanting to cry from embarrassment. ‘I’m so sorry. I don’t eat much,’ I had to say.

It was my mother who, just recently, introduced me to Slipstream. When I read the passage above, I wished that Howard was still alive, so that I could write to her and thank her for these words. It helps, when you are going through difficult times, or when you are experiencing something troubling and bewildering for which you yourself have no words, to read someone else’s words on the same thing. Here is Howard again:

I had no energy for writing, I didn’t like living alone, and I could hardly drag myself to the office every other week to earn the six pounds that barely kept the wolf from the door … I remember the misery of sitting in restaurants faced with enormous menus and finally asking for something like a piece of cold chicken only some of which I managed to force down.

During the worst phase of my own bouts of nausea, I felt my life began to fold in on itself. Although I wasn’t ill all the time — although there were days and weeks when I felt well: days, even, when I felt as though I’d never feel sick again — those bouts took a toll on me. I called in sick at work frequently, and worried about the consequences. (Would I be put on a performance plan? Would I get sacked? What if I couldn’t hold my job down anymore? How would I live with myself if I couldn’t make a living?) I worried about my social life. (What if I lost all my friends because I kept cancelling on them at the last moment? What if they didn’t believe me when I told them I was sick? What if they thought I was just neurotic, or antisocial?) And I fretted about people in my family, whom I wanted to see more frequently than I did. (Did they know I still loved them? Did my absence hurt them? Were they, too, judging me?) I began to feel disabled on all fronts — by my symptoms of illness, by my fear of those symptoms, and by my shame about my fear.

The sickness happens less often now, I am glad to say, though it still comes, accompanied by symptoms that feel worse than they sound: fatigue, headaches, nausea, heavy eyes, weak limbs. I am as yet to find a cause. In the meantime, when I do experience bouts of illness like this, I try not to let myself feel the way I felt during that worst phase. Isolated is one word that comes to mind to describe the way I felt. Lonely is another.

And here is where reading helps. Reading Howard’s words I feel a sense of kinship. The kinship makes me reflect, as I so often do, that writing is an act of sharing, and that sometimes — sometimes — reading can feel like a defence against loneliness.

♦

It wasn’t until I read Toni Bernhard’s How to Live Well with Chronic Pain and Illness that it finally became clear to me that illness — whether it’s serious or mild, whether it’s intermittent or constant, whether it’s accompanied by fear or not — is, inherently, lonely. Experienced long-term, it is all the more so. Bernhard, who lives with a fatigue-related chronic illness that keeps her largely bedridden, is illuminating on the theme. She writes:

In these moments when I accept that some of the people I know may never understand what life with chronic illness is like for me, I’m able to let go of the painful longing and fruitless desire for them to behave as I want them to. It’s like putting down a heavy load because I’m finally giving up a fight I cannot win. This gives rise to equanimity –- that calm sense of peace and well-being with my life as it is, whether others understand it or not.

Read those sentences again: Some of the people I know may never understand. Those words go to the heart of loneliness. So do these: painful longing. Fruitless desire. Illness should not entail any of these kinds of feelings, but it does. It is a very lonely experience. (If you are experiencing illness-related loneliness, I highly recommend Bernhard’s book. Her words are both wise and comforting. They may even impart a sense of kinship.)

The main character in Marilynne Robinson’s book, from which I quoted at the top of this post, is lonely in another way. Lila’s loneliness is the result of poverty and an extreme lack of love in her upbringing, and her experience of it is utterly embodied. I’ve never heard loneliness described this way before, but I find the interpretation as enlightening as Bernhard’s. Loneliness, Robinson is saying, is a physical — a visceral — thing. It is as much a part of living as hunger and fatigue; it is with us from our first breath to our last. Like illness, it is a part of the cycle of being alive in this world.

Perhaps the difficulty we have with loneliness, then, is not so much with its actual presence, nor with its cause — whatever that may be — as it is with the way we experience it and interpret it. I find this thought strangely consoling.

Is it possible to feel consolation and loneliness simultaneously? Probably — but it’s much harder.

Note:
There are a number of bloggers who write about their experience of living with serious or long-term illness. Here is where the blogging community comes into its own! Two bloggers whose frank, clear-sighted words on illness I particularly admire are Elana Amsterdam of Elana’s Pantry, who lives with Multiple Sclerosis and writes about managing her illness through a grain-free diet and a low-stress lifestyle, and Ali Feller from Ali on the Run, a passionate runner who blogs about living (and running) with Crohn’s Disease.