Anna explains how they felt unsupported and abandoned by loved ones due to ableism.
I never had a large social circle, but my small circle diminished to nothing when I became disabled due to chronic pain caused by ankylosing spondylitis and fibromyalgia. Being disabled is already such an isolating experience due to societal inaccessibility and a lack of awareness of disability, but experiencing social isolation in addition to disability takes a toll on one’s mental health. When I became disabled, I figured my relationships with friends and family would change, but I never expected them to end. Having loved ones leave me was one of the hardest things I have experienced.
My chronic pain caused by arthritis worsened gradually over several years so, my disability came on slowly. I thought this meant that I and the people in my life could slowly adjust to the changes in my abilities. But in my experience, it meant those close to me stopped contacting me as much. Due to treatment-resistant disease activity and flare-ups, I would cancel plans more often and decline invitations and eventually, my loved ones stopped asking me to hang out. It made me feel incredibly lonely. Sometimes when I would voice this, my loved ones would say, “Don’t worry! If you can’t come hang out, we’ll come see you.” However, they seldom did. And on the occasions they did, I was unable to do much (i.e., be my pre-disabled self) due to pain, and I guess they found it hard to connect with me as much as they used to.
There were many times when we would try and plan simple hangouts and they would find it challenging to understand that I had to plan how I use my energy, time when I take medications, use different therapies, and use different mobility aids depending on the activity. Although they never said it, it became clear that hanging out with me became a hassle and they no longer thought it was worth the trouble. I would compare this to when you feel someone you care for beginning to lose interest in you.
Not only did it become difficult for loved ones to relate to me, but it became difficult for me to relate to them as well. I couldn’t go out or engage with popular culture and discourse as much and wouldn’t know what they were talking about. I also often wouldn’t have the energy to reply to texts or answer phone calls and my loved ones took this very personally. I wanted nothing more than to talk to them like I used to, but since becoming disabled, so much of my time and energy went to managing my symptoms, leaving little energy for much else.
Becoming disabled during my early twenties was very isolating.
Many people think arthritis only affects the elderly and that young people are impervious to illness. So, it was difficult for them to understand how I struggled with my health as a young person. I couldn’t go out and have fun. I couldn’t go out and party. I couldn’t live my life spontaneously and without care. All my time and energy had to be planned carefully and most of my days were dedicated to rest. Able-bodied people don’t have to think about this, especially young people. Having to carefully plan out how I use my time and energy and schedule in rest made me seem inflexible and uptight to people who don’t have to consider these things.
Since most days became about managing my symptoms, my disability was constantly on my mind. It’s something that I must consider every step of the way. Consequently, I talk about my disability often. To me, this seems like a natural and understandable thing, but I often met backlash for it. Friends and family would tell me I was being “too negative” or “focusing too much” on my disability. Yes, there were times when I would inevitably be negative or times my internalised ableism would make me feel very down. However, most of the time, I was just sharing my daily experience but their ableist notions made them think that experiencing and talking about disability is a shameful thing or a moral weakness.
As most of my days revolved around managing my health, I didn’t have much going on, especially during flare-ups and when my treatments weren’t working. Sometimes, talking about my disability was all I had to contribute to a conversation. I saw how this made many of my loved ones uncomfortable and probably contributed to them talking to me less and less over time.
It took me a long time to realise that many of the relationships in my life only existed because of the time and effort I put into them. When I was unable to do that, there was nothing there. It made me feel lonely.
I felt so alone until I found the chronic illness community online. This is because there aren’t very many supports and resources for young adults with chronic illnesses and disabilities. There is a lot more support available to children and the elderly with arthritis. Many of these supports focus on ensuring that children and the elderly do not become isolated and experience mental distress. Supports like arthritis camps, group homes, day camps, group therapy, and more are unavailable for young adults. Undoubtedly increasing the isolation disabled young adults experience. The chronic illness and disability community online tries to make up for this lack of community support by coming up with their own virtual spaces to reduce loneliness.
Finding this community online helped me find other young people who were also disabled. I could finally relate to my peers again. They understand that staying in contact takes a lot of time and energy, so nobody takes it personally. I still feel lonely sometimes since I don’t get to socialise much in person, but I am not as lonely now.