There are times when I get super jealous of able-bodied people.
There, I said it.
As much as envy is not exactly a fruit of the Spirit, this try-hard Christian experiences jealousy on a semi-regular basis.
I feel it watching other people climb stairs without a problem.
I experience it when friends regale me with stories of their latest hike, marathon run or bike ride.
I’m aware of it when older people squat without gasping in pain.
That’s when my inner rage monster awakens. I rail against the unfairness of my situation. I’m furious about how my life has become constrained and limited by lupus. I hate that I have become a person I never wanted to be: risk-conscious, energy-conserving, home-basing. In a word, picky.
But there’s no denying it either. Life with chronic illness is naturally more constrained, exhausting and filled with risk than it might otherwise be. I have experienced significant world shrinkage since becoming ill. I can no longer work full-time, go for long walks, climb stairs, or be the carefree person I always wanted to be.
At my worst, I have been house-bound by pain and immobility. I have been unable to walk or stand for more than a few seconds at a time. I have been hospitalised, probed and scanned within an inch of my life. I have been unable to keep food down for weeks or months at a stretch. I have been unable to speak or sing, sometimes for years.
That’s not even the worst-case scenario either. Many people in the chronic illness community are bedbound. Many are unable to work; some are unable to cook or even feed themselves. That is definitely at the severe end of the illness spectrum.
As much as comparing myself to those severe examples can throw my angst into sharp relief, and as much as I am grateful for every single day that I can work, move and (mostly) look after myself, I still get angry. The rage is undeniable.
I’m learning to get honest about rage.
What do I do with that? I’m learning to get honest about rage. It’s no good to pretend I’m OK with being sick when I’m really not. So I vent to God, supportive people and trees about what’s going on. It’s not very filtered or polite. Sometimes it’s more like a hulk-type screaming fest (I tend to scream more at trees than people, in case you were wondering). But it’s real. And it’s better than faking good.
I practise gratitude, of course, and I channel my anger into creative pursuits. Typing out my feelings or playing them out on the keyboard can be wonderfully freeing, especially when I can’t be bothered to put words to my feelings. Cuddling my cat helps a lot. As does chocolate. The importance of self-care during a rage-mood cannot be overstated.
The other thing I do is explore what’s under the feeling of rage. Most of the time, it’s grief. I feel so sad about the Steph I have lost, the Steph I wanted to be—but whom I can never be. I grieve the world shrinkage. I grieve the impact on my faith and on my capacity to work and string words together. I grieve for the hopes, dreams and future I will never have.
I also grieve the impact chronic illness has had on my relationships with others, including the jealous bits. That is just as much a loss as is any other aspect of living with chronic illness. If you have experienced that too, let me join with you in your rage and grief. It’s not fair that chronic illness has taken our lives away from us. It’s OK to feel sad and angry about that. And it’s definitely OK to say so.
Do you ever get upset or angry about living with chronic illness? What do you do with those feelings? Do you find it helpful to talk it out, write it out, scream it out? Share your story. Let’s have a countercultural conversation.