I woke up with a niggle in my chest. It’s fine, I told myself. I took pain killers anyway. They I laid down to rest, but the pain became rapidly worse. So I got up, sat on the couch, and began praying that the pain killers would kick in really soon.
Twenty minutes later I was on my way to hospital, struggling to breathe.
It turned out to be pericarditis, inflammation of the lining around the heart. It looked and felt a whole lot like a heart attack. They kept me in hospital for three days, pumping me full of morphine so I could breathe through the crushing sensation in my chest. Eventually the pressure eased, and I was discharged.
That experience changed me. I became profoundly anxious after that, petrified of having another episode of pericarditis. It had been triggered by absolutely nothing, given me minimal warning, and rendered me non-functional and in need of emergency medical help within twenty minutes.
Try going to the shops with that on your mind.
What has all this to do with grief? Chronic illness is synonymous with grief. When you get sick or disabled and you don’t improve, you start losing things. You lose the ability to work or do chores. You lose your capacity to make plans and keep commitments. You lose a pain-free existence. You lose track of friendships, and they lose their patience and understanding with you (unless they are incredibly rare and empathic friends—I am lucky to have several).
Chronic illness is synonymous with grief.
After that pericarditis episode, I lost my peace of mind. My headspace became consumed with what-ifs and worst-case scenarios, because the worst-case was non-hypothetical. It had happened to me. And even though I had survived, the threat of it happening again, possibly with an even worse outcome, crowded out all sense of hope and joy.
This led to me losing my natural sense of optimism. I lost part of myself. I try to hope for the best, but I am not the same person I once was. Chronic illness changes you, your day-to-day life, and your future. Grief is a reasonable reaction to this accumulation of losses.
Grief makes me angry. Grief makes me sad. Grief creates a sense of injustice in me, the unfairness of what I have to do just to get through the day that others don’t (like taking meds). Grief scares me. Grief saps me of hope, faith and my sense of humour.
Is there a cure for grief? Apart from finding an actual cure for the chronic illness, you mean? No, I don’t think so. I will probably grieve for the rest of my life. The only way I know to deal with grief is to grieve. That means feeling what I’m feeling (yup, even the ugly parts). I’m not suggesting we feel all of it in one go—one wants to stay sane, after all—but perhaps little pieces at a time, one hour at a time, one fleeting moment after another.
It can be helpful to create spaces for grief, especially when your headspace is fuller than a hipster café on a Saturday morning. Journalling, listening to music and taking time in nature can help us find breathing space. You might find it helpful to talk to a trusted friend, pray, have a bath, eat cake or light a candle. You might want to create a physical space for yourself, a corner or room in the house, where you can go just to be with your thoughts.
When chronic illness has reduced our lives to chaos, creating space for grief can be sanity-saving.
Do you experience grief related to chronic illness? What do you find helpful in letting that grief surface: retreating from the world, talking to a friend, talking to God? What would you recommend to a friend who was grieving? Share your story. Let’s have a countercultural conversation.