ID: The words New Blog Post in the upper right hand corner. Below are the scales of justice with four hands forming a square by each holding another hand’s wrist on one side and a bird in flight on the other side. Above is the title, Balancing Independence and Support.
Being disabled can lead to social isolation that can negatively affect wellbeing. And disability and chronic illness can require physical support that make living independently hard. Balancing the desire for independence and privacy with the need for support and human connection can be especially challenging when you are managing chronic illness and/or disability.
I lived alone for most of 2019 and 2020. The difference in my experience of those two years was drastic due to the COVID-19 pandemic. By the end of 2019 I was working with a caregiver multiple times a week and I was able to see friends and family for social interaction. By mid 2020, my social support, like many people’s, diminished as the pandemic raged. But it was my caregiver having a COVID-19 exposure that helped me realize it was not safe for me to work with a caregiver at that moment. Losing that support effectively meant I had a lower quality of life. Luckily, my sister lived nearby and took extensive COVID precautions so she could help roughly once a week. Her help was invaluable and I am so grateful for her support. But transitioning to her 2-3 hours a week versus my trained caregiver working with me for almost 10 hours a week was very hard. These two years, for me, represent the two extremes of living alone. 2019 was full of physical and social support and I was able to live independently, comfortably. 2020 was not only socially isolating, but living independently meant that I had no one to help with the day to day tasks I can no longer manage. Without adequate physical and social support, living alone can be almost impossible.
Being disabled and/or chronically ill can be isolating. Lower rates of employment can mean not only a lack of relationships with coworkers but also a lack of acquaintances, as your interactions with the outside world diminishes. It’s hard to have a friendly connection with a service or retail worker if you’re not actually leaving the house. Social relationships can be harder to maintain as well. Many public spaces are not accessible and therefore events happening there or groups that meet there are inaccessible to many disabled and chronically ill people. In some cases friends or family member’s homes may not be accessible. While there may be solutions, like inviting people to your accessible home or an accessible public place, it’s not always that easy. As someone who has been bed bound multiple times for many months, I would go days or weeks only speaking to one family member who could care for me. All of those small interactions with baristas, bartenders, or other people at the grocery store vanished. The level of isolation becomes severe, quickly. It would be hard to explain if we had not just experienced a global pandemic. But this kind of isolation happens everytime I become housebound.
I currently live with family. I have a new caregiver that I work with 15 hours a week. My family will be away for a month, on a yearly trip. This will be the first time I will be alone since 2020. At first I was pretty concerned about my ability to live alone again. Between the family and friends that live within thirty minutes of me and can offer me assistance, and my caregiver’s regular hours, I am now confident I can handle being on my own. I’m excited for the freedom and peace of living alone, even if just for a month. But when I have difficult symptoms, my anxiety becomes amplified because “I’m alone.” Just as my challenges due to chronic illness can shift with time, so too can my solutions. At the moment, I am supported enough to take on this month alone. Who knows where I’ll be next year, or in five years. Right now, I have found a way to manage my need for physical and social support with my desire for independence and privacy. In the future that blend might shift. There is no constant solution to this situation. It’s just another aspect of living with chronic illness and/or disability that must be carefully managed.
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