How chronic illness changed our lives

Part Two of a series on relationships and needs in my chronic illness/disability context

From 2012-2021, I worked as a Physiotherapist in acute care – with people admitted to hospital. I worked outside the home 5 days per week, and sometimes more with our weekend and evening rotation. In contrast, my spouse has worked from home for over 20 years. Long ago, he converted a bedroom into his home office and built his business, and his writing and justice work. Up until 2021, the house was quiet when he needed it to be. Or, it was loud with meetings, calls, or music at his discretion. His daily routine was secured and generally uninterrupted. I would return home from work just before 5pm and our greeting would sometimes be his first words spoken all day. For me, it was a quiet sanctuary after talking and noise all day long. Then I got sick and everything changed. I no longer work and my average day is spent at home. Even 4 years into chronic illness, with medications helping my symptoms and a better understanding of my limits, outings can cause flaring and days of recovery. Going from working full time in a very busy, high-pressure hospital environment, to now being at home most of the time, has flipped our worlds upside down. Chronic illness realities changed my spouse’s routines, too. There are pros and cons to being at home together daily, and change can be complicated.

We committed to care for each other, but naively expected more years of “health” (doesn’t everyone?). Needing to suddenly adjust to a caregiving role was unexpected and came with new demands on my spouse. Our dreams for the future look different, too. We have not had to let go of our dreams altogether but must adjust and re-imagine them. What we envisioned and how we envisioned it is gone. Being confronted with risks of a shortened lifespan is grief-worthy, too. We might grow old, together. We may not. My chronic illnesses are a mark in the “may not” column. None of us are promised a certain amount of time on this side of reality, but we like to imagine and hope for living to an old age. That hope remains, even as the odds have shifted.

Part of being in relationship with people is watching those you love go through hard things, and accepting you cannot fix it for them. It is difficult no matter the context or relationship role. My spouse watches me deal with problems and daily symptoms he has no control over. He holds me through it and supports me as best he can. Some of the internalized ableism this brings up for me is feeling guilty that my hard things affect him. I watch him go through the hard things with me and wish it were not so. That is the non-ableist truth of it: wanting things to be easier for him (and me) because we deserve to have fewer hard things in this life. It isn’t my fault, and I still wish things were different.

When people say “chronic illness is a full time job”, it is not just a cute phrase. I am constantly having to prove my chronically ill and disabled existence in multiple ways, repetitively, and via far too much paperwork. When you’re ill, “normal” medical needs and appointments do not disappear. I still need to visit the dentist and get a pap test. I still need regular vaccinations, an occasional haircut, and to sign something at the bank. On top of that, I now have periodic appointments for prescription refills and labwork. I have further appointments to brainstorm interventions, or for investigating emerging symptoms, or to follow up on abnormal test results. And on and on. There is just so much labour, and I am too sick to shoulder it all. In fact, many people are forced to manage it on their own despite being too sick to do so safely. I am grateful to have the support I need. My spouse helps with all of this by physically assisting with paperwork, being present at appointments an driving me to them, and as a listening ear when I need to process the overwhelm.

Beyond symptoms and downstream comorbidities, a hard part of living with chronic illness is the external ableism we encounter. Life with chronic illness would be far easier to bear, otherwise! Ableism shows up interpersonally in our relationships with people. It rears regularly in medical settings. It is ever present in navigating systems of insurance, medical/healthcare, financial institutions, and more. These ableist aggressions can be traumatizing, and my spouse experiences vicarious trauma through my experiences. He has witnessed medical abuse. He has faced and is facing scary unknowns and likelihoods in our future. We both field hurtful words from well-meaning friends and family. A common story among people with acquired chronic illnesses is one of loved ones you expected to show up who did not, or could not. We have lost relationships, or had them shift beyond recognition. It’s normal for relationships to evolve – some for better, some for worse and long gone – but it is especially hard when they are lost because people cannot stay beside you through the hard, chronic illness things. We cannot fix these things as individuals within a society of systems that medicalize and pathologize me; that dehumanize and make us the problem. We simply learn how to honor our limits and needs while we continue on making the best life we can.

My spouse and I enjoy trying new things and playing outside. Our past adventures include many an epic, Rocky Mountain hike, summiting peaks, trekking to lakes, breathing in jaw-dropping vistas, together. A few of them come to mind immediately as I write this. Bike rides downtown and to visit our friends. Date nights “out on the town.” We still have fun and enjoy outside in ways I can access, but I have lost my ability to frolic in the outdoors as I once did. And he has lost his outdoor adventure and sports partner. Now, when my spouse goes to the mountains without me, he brings home stories, photos and videos, and sometimes a heart-shaped rock from the trail. Adapting and finding ways to still engage with things we love is a strength of ours – both as individuals and together in our relationship – but we sure miss standing atop mountains, together.

Loss. Pain. Hard things. Perhaps, these are just part of living as a human. Also part of living are connection, joy, and beauty. Illness does not stop us from joy and love. My spouse and I have more time together than when I was well and not at home daily. We are unlearning our ableism and learning newly about disability and what interdependence looks like – not just with each other but in community with others, too. We are learning quickly about needs and limits, and how to communicate and advocate for these things with each other and with others. We are seeing the injustices of this world more clearly than ever before, and doing what we can to right wrongs in our corner of the world. These things take energy and capacity we don’t always have, but nonetheless we are better for them. I am often reminded of a Jen Brea quote from her ME/CFS documentary film, Unrest. She said, “You have to be able to hold two things in your head. This illness destroyed my life, but what it showed me I could never give back.” I remember this regularly. We relate to it deeply. We hold close the truth that my spouse and I have a deeply lived knowing of some things others either cannot grasp or avoid holding, in a world that encourages dissociation, disembodiment, and division by way of “you do you” individuality. Disabled people are regularly left behind, devalued, and dehumanized. My spouse and I know it intimately, and we are grateful for learnings that liberate and lead us to more wholeness. Holding this close allows us to have grace for ourselves, each other, and others. It helps bolster us in this time of disposal of human life in an ongoing pandemic and rising fascism. It helps us make space to process the difficulties of change and challenge that come with chronic illness life.