I can manage my illness and hold a job, but it’s freaking hard. I get up and need a couple hours to work through my morning pain. I need to plan for unpredictable energy levels in case I need to take breaks through the process of treating Lyme and getting ready to leave the house. A lifetime of chronic migraines has given me skills in accomplishing a baffling amount of work while I’m in phenomenal amount pain (I don’t necessarily recommend this, it’s a skill-set, not a value judgement). When I get home, I manage Lyme. This includes a complicated med regime that makes all my symptoms flare (it’s called herxing and is part of my healing process). It’s a ton of work to then reduce my pain levels enough to sleep. What’s missing from this? Oh, a date with my wife, coffee with a friend, hobbies… In short, there’s a Pleasure Scarcity.
I’d had a really stressful couple months of work stress, symptom flares, our house getting sold out from under us, and even a concussion. One day a couple of friends packed a picnic and picked me up from work. We walked along lush rainforest paths, ate delicious cheese on baguettes, drank sparkling raspberry juice, and swam in fresh lake water. I left with so very rejuvenated after and also held the acute sense that it had been many months, even years, since I’d enjoyed some of these simple pleasures. This issue of Pleasure Scarcity is a common one for folks with chronic illness.
Many people in the Living Chronically Group discussed this dilemma. Since we had way more that needed to get done than we had the capacity to do, we often felt as if we did not have a “right” to do what felt good to us. Folks struggled with this feeling when it came to coming to the group itself– if they knew they would only have a few hours where they could be out of bed that day and had a sink full of dishes and a pile of laundry, how could they justify coming to a group? The answers were made clear: for a sense of community, for quality of life. I’ve said it before, but it needs repeating: living with a chronic illness is rough. We have got to have moments of enjoying life as well as getting through the day .
There are so many unhelpful things people with chronic illnesses hear on a day to day basis, not the least of which is the idea that it must be luxurious to “lie around all day” or that we are “lucky” to need 12 hours of sleep. These things are not true! Constant pain is exhausting and exhaustion is not luxury. Sadly, internalizing such sentiments is all too easy. If you constantly repeat that you are not just hanging out relaxing, that chronic illness is work, what room is there to ever just hang out and relax? Many able-bodied folks take a few hour to do something pleasurable or unwind at the end of the day without guilt.
I recently called a good friend whose chronic illness is similar to mine, when I called she had been lying down watching a show and was grappling with guilt because at that moment she was well enough that she could have gotten up. I have struggled with this too. As soon as I have a window with a bit more capacity, I feel an internal pressure to do everything that I often can’t do. In “The Myth of 50/50” , I discuss relationship equity as everyone doing everything they can, as opposed to an equal share of the total amount of work to be done. But what does it mean to do everything we can do? If our pain eases for a time, we may be technically able to clean the toilet and toilets need to be cleaned, but can we also give ourselves permission to recover our energy? If we are capable of doing dishes one day but would then lack the energy to have a nourishing phone call with a long-distance friend, can we sometimes choose what is nourishing to us?
Right now pain is a given for me and pleasure is optional. I am trying to find ways to cultivate pleasure in my life: sharing massages with friends on a blanket in the backyard, reading stories out loud with my wife, picking blackberries, walking with my feet in a stream. The intention is helping me to find more moments where pleasure can happen and this, in turn, reminds me that life can sometimes feel good right now. These moments are critical to having the strength to continue to work through Lyme disease. If you are living with a chronic illness, I know pleasure might not be an option for you at this moment. The last thing I want anyone to take-away from this post is for to feel further burdened by a pressure to not just make it through the day with an illness, but also to find some damn pleasure too! It is my hope that by articulating the concept of Pleasure Scarcity, we can develop more tools to address it as part of the issues faced by people with chronic illnesses.
When this is a choice, let’s make a choice to include pleasure in our day to day struggles with chronic illness.