One of the aspects of having chronic illness that still upends me is The Disappointment. Yes, capital D. I’m using it intentionally because it really feels that big, that interruptive, and sometimes, that threatening. We’ve all had so many experiences where we’re looking forward to something and then–whoosh!--immediately something happens and plans have to change. Then comes that sinking feeling, the pit in your stomach, that signals to that the thing we were looking forward to is no longer. Oof. As a spoonie, this has happened to me like a zillion times now, and yet, it can still catch me completely off guard! Honestly, I think that Disappointment continues to surprise me because it’s one of the few areas of living with disability that I haven’t fully accepted–mostly because I really don’t want to.

to be human is to grieve

As humans, we experience repetitive loss. I don’t say that to depress or discourage you, just to be realistic that grief and loss are significant, frequent, inevitable aspects of the human experience. When we get attached to something, someone, an outcome, a place, a pet, a feeling, etc., we become vulnerable to the possibility of losing it in the future. Of course, loss isn’t guaranteed and certainly this isn’t me saying that we should avoid opening ourselves up to becoming attached (though this is how so many of us have creatively coped with painful, early relationships!) Oh no, quite the opposite! In fact, I am someone who loves to have things to look forward to and uses future plans as a way of finding optimism in moments of overwhelm and stress, i.e., “this week is hard and heavy, but in two weeks i get to go on vacation! Yippee!” The only MAJOR downside of this stress management strategy is that my good friend, chronic illness, tends to seriously get in the way. Anyone who regularly has to be mindful of their spoons knows what I'm talking about–let’s hear it for the spoon clinkers in the back! Yes, disability and chronic illness have this little, pesky way of being, at times, incredibly & highly disruptive. 

Having chronic illness means encountering uncertainty and tolerating not knowing what will happen…Every. Single. Day. Even with all of the preventative measures in my arsenal, my body will flare and I’m served the bitter pill of a very harsh reminder that I’m not fully in control of my own capacity and limitations. And of course, this can happen without warning and almost immediately. Needless to say, that aforementioned strategy of looking forward to things, people, events, emotions, in the future really doesn’t mesh well with the unexpected nature of chronic illness! 

managing chronic illness requires tolerance for uncertainty

I can’t tell you the amount of times that I’ve been very much looking forward to something, like getting together with friends, a favorite band in town, holidays and vacations, etc., that have ultimately been derailed by an unexpected flare of symptoms. Sometimes I’m able to adapt how I can show up to still get some partial enjoyment and other times the only option is to stay at home and forgo the event I was looking forward to. Ouch! Losing out on something I’ve felt truly excited about can be utterly devastating. The pain of this disappointment and loss can invite such frustration with myself, my body, and my circumstances…in these moments, having a disabled body feels truly unfair. In these moments, living in a disabled body feels like a setup for perpetual disappointment. 

When faced with intense disappointment and loss resulting from illness, my body suddenly is no longer as much a part of me as my mind and soul are, but instead this thing I’ve been saddled with that creates obstacles to connection, pleasure, and joy. It’s amazing how some nervous system activation really colors your perspective and can, for an instant, disconnect you from the myriad identities of privilege you hold! Frame of reference, context, intersectionality? Out the window. In these moments, grief and disappointment reign supreme–and, that’s okay. 

chronic illness often means grieving

In my experience, one of the most significant trials of living with (not fighting against) chronic illness is encountering, processing, and then re-encountering loss over and over again.  It can be heartbreaking to begin to accept that disappointment and grief are inevitable. I’m feeling that right now as i’m writing this! I’m hearing the very familiar, yet conflicting voices in my head that say: “Of course this is part of being sick and fighting it just makes it harder,” and also saying, “It’s not fairrrrr. I don’t wanna. I just want to get excited about things like everybody else.” And yet another voice that says: “What might  happen if I accepted this? Of course I need to have hope and things to look forward to!” The reality is that all of these voices are in the mix. And all of their corresponding emotions are too. I know and understand that disappointment, grief, and loss are a huge part of disability–they’re also a huge part of being human. For now, today, I’m choosing to know this and make plans and get excited about things in the future anyway. Sure, it can feel like a setup for Disappointment, but it’s also a Possibility for hope, connection, and enjoyment of this, one life.

Kaitlin Kindman, is a co-founder of Kindman & Co., an activist, and a feminist. Her purpose is to help her clients come to believe that they are not alone, they belong, AND they inspire—they have the power to bring about change. She works with her clients to feel more connected, so that they take actions that improve their relationships and the world.

Kaitlin is deeply committed to providing socially just and anti-oppressive therapy. She really loves working with couples to improve their relationships and deepen intimacy, with other therapists and healers, as well as entrepreneurs and other business owners. Kaitlin finds true enjoyment in cuddling with animals, a just-right temperature cup of tea, feeling the sun on her face, and dancing in supermarket aisles.

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THERAPY SERVICES AT KINDMAN & CO.

We are here for your diverse counseling needs. Our team of therapists provides lgbtqia+ affirmative therapy, couples therapy & premarital counseling, grief & loss counseling, group therapy, and more. We have specialists in trauma, women's issues, depression & anxiety, substance use, mindfulness & embodiment, and support for creatives. For therapists and practice owners, we also provide consultation and supervision services! We look forward to welcoming you for therapy in Highland Park and online.