Posted 5/5/2023 2:21 PM (GMT 0)
Hi, Kara. I became chronically ill when my child had just turned five. I had been struggling since her birth (a physically and mentally traumatic event) but just chalked it up to being sleep-deprived and isolated, and figured that I'd feel better once she got older and I had more of a life of my own again. I had begun training as a midwife and was feeling hopeful and excited about my life.
Instead, I depleted myself consistently and ended up disabled for many years. It was so painful to miss out on so much of my young child's life, destabilize my family, burden my partner, and accept that all the goals I had for myself would not come to fruition. I felt what we all experience when we get very ill - disappointment, frustration, despair, etc. - but with a thick layer of guilt on top because of how it impacted my child. She and I had spent every second together, doing things all day every day, roaming all over the city and seeing friends, being actively involved in our communities. Two months after I got sick, she developed frighteningly disordered eating as a way to try to regain control over this scary and out-of-control situation. Ultimately we all found healthy coping skills and found our way through, but I know the trauma of having a sick primary caregiver will stay with her and echo in her health in years to come, even if I'm the picture of vitality from here on out.
I do remind myself of the things that my unexpected detour into disability and medical distress taught us, though: how to be genuinely inclusive of people with disabilities (visible and invisible), what it means to be a good friend, what community means, how not to take things for granted, how to appreciate the little things, how to define your worth separate from your productivity, how to adapt and be resilient, how to choose healthy coping strategies when the unhealthy ones are so much easier sometimes, how to set boundaries, how to listen to ourselves, how to care for ourselves, how to be there for each other, and how to advocate for ourselves. In many ways, those things matter more than the years of museums and trips and other fun things we would have done if I had not developed chronic illness.
How are your kids coping with your illness? How are you doing these days?