When Loneliness and Isolation Are Side Effects of Chronic Illness

Many people mention negatives, side effects and drawbacks of chronic illness. The one I find most often overlooked, both by professional literature and anecdotal evidence, is the severe isolation and loneliness that can come with being sick. We are treated as less than equals because of our disability in so many ways. We need social interaction just as much, if not more than able-bodied/neurotypical/healthy people.

So often I don’t get invited somewhere and hear, “We didn’t think you would be able to go or want to go, so we didn’t invite you.” I’m then left trying to explain, often in tears, that I do indeed want to go out with them, but am not always able to. I know that I, like most other chronic illness patients I’ve spoken to, would rather be invited and then have to decline, than not be invited at all. I know I feel so excluded and isolated when people don’t invite me.

The other part of isolation that occurs with a chronic illness is being made to brave the medical and social system alone. For many people, when they have a doctor’s appointment for something serious or they go to the emergency room, there are people who rush to be at their side. When you have a chronic illness, people may stop caring after a while and/or can’t be bothered to make the effort.

For me, this happened a few weeks ago. I was still at college and the residence director for my building saw me sitting in the lobby and was making sure I was all right. I had been extremely lightheaded (too much to stand) and unsteady on my feet. I laid down on the floor and told him what I was doing as I knew a seizure was coming on. He called an ambulance for me and I was transported to the hospital. I texted my mom from the emergency room and told her I was there. She just said, “OK, call me when you’re home.” My parents live 25 minutes from the hospital and it’s not as if the weather was bad. I was furious. There was no reason for me to lay in the ER for six hours alone just because my mom didn’t want to once again deal with it. I knew I was just dehydrated and had low blood pressure, but I still didn’t like being alone. No one wants to be made to go for tests/lab work alone, let alone be in the hospital alone. Unfortunately, the reality for so many of us is that we don’t have family or friends at all, or we simply don’t have anyone who cares. Often, those family and friends we do have think we are faking. I know I’ve heard it.

In short, think twice before excluding or ignoring friends and family with chronic illness. We need the love and attention just as much, if not more, than other people. Chronic illness by its nature is incredibly isolating. Don’t not invite us because we often cancel or say no, or because you think we can’t handle it. Let us be the judge of that.

Treat people with disabilities and illnesses the same way you would treat anyone else.

Follow this journey on Love and Spoons.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.