The Hardest Parts of Living With a Chronic Illness We Don’t Talk About
Greetings, friends. I’m back here with another moment for chronic wellness.
Today’s question is a doozie: What’s the hardest part of living with chronic illness?
The reality for me, and I assume for most people, is the answer to this depends on what day or even what time of day you’re asking me. There are some things that have been consistently hard across this journey, and some things that have been so unbearably hard in the moment that I wasn’t sure I would (or wanted to) make it through the day.
Here’s a rundown of some of the top things that came to mind as I was contemplating this question:
Isolation. Long-term, nagging, chronic, never-gonna-recover, chronic or progressive disease takes a toll in so many ways. One of the near ubiquitous outcomes of chronic illness is that it is isolating. Not only is the experience of being sick isolating – as in, “others around me are healthy, active and more able-bodied,” but it’s isolating, too, in that I am often left behind, left at home, unable to participate and be involved in the world, community and life, in the ways I once was. Instead, I am at home, at the doctor, in pain, in bed and spending most of my time living like a shut-in.
Going from being an incredibly active, tremendously outgoing person, to living in such solitude has been a radical and painful adjustment. Having time where I am unable to connect yawning out ahead of me, knowing others’ busy lives are going on without me, has been one of the most difficult parts of getting sick.
Related to the isolation has been the loss of so many aspects of my identity. I am no longer able to work. Work is a primary dimension of how I expressed myself in the world – being unable to perform in that way felt like such a loss. There was more grief involved in this transition than I ever imagined. Getting to the point where I understood that work was out of reach was so hard. We are such a culture of “humans doing,” and use work as such a measure of who someone is in the world that I was unsure what my worth was without the yardstick of work to help quantify.
Also, accepting the label of “disabled” was so tough, seeing in black and white how “incapacitated” I am and acknowledging how broad reaching the impacts of my diseases are was devastating. And it isn’t just the loss of my work persona; I prided myself on being a good friend, a good partner, a reliable neighbor, an active volunteer, etc. and all of these identities came crashing down at the same time. Trying to figure out how to function in my new disease state while crawling out from under the wreckage of my past-life was crushing.
Then there’s the guilt. Whew, the guilt. Listen folks, understand this does not serve me at all. There is no benefit to me, or anyone else, in carrying around guilt. But the reality is, it is there and I’m working to lessen it by acknowledging its existence. It is there in the small stuff like, not being at my friends’ children’s soccer games (because they matter to me, and I want to show up), to missing bigger life events, to saying that I’ll hope to make it to something and then, on the day, not feeling up for it. It’s the unreliability of my circumstance, and therefore, my word – which used to be a sure thing.
It’s the guilt over the life I imagine my partner would have if she weren’t tied to me, a sick person, how she would live so differently – so much better, if she were with someone healthy, active and pulling her own weight. There’s guilt about surviving the terminal diagnosis I was given three years ago when others I was diagnosed with have not. I have guilt over not being the kind of friend, daughter, wife, I used to be. I could go on – but I’m guessing you get the picture.
I haven’t even talked about the medical side of chronic illness – from the difficulty of being believed, and trying to get a diagnosis, to what it’s like to spend huge chunks of your life being a professional patient. I guess we’ll save those for another post.
Here’s just a glimpse into a few of the things that, today, struck me as the hardest parts of living with chronic illness. What are the hardest parts for you? What do you find most unbearable? Is it the way that chronic pain erodes your ability to function? The relationships that have dissolved? Or something else? Leave your comments below and tell me.
Until the next time, thank you and remember: whether or not you’re ever “healthy” on paper, you can be well.
Follow this journey on Annette Leonard’s blog.