Many people mention several negatives, side effects and draw backs 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.” You’re then left trying to explain, often in tears, that you do indeed WANT to go out with them, but you aren’t 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 most people, when they have a doctors appointment for something serious or they go to the emergency room, there are people that rush to be at their side. When you have a chronic illness, people 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 alright. I had been extremely lightheaded (too much so to stand) and unsteady on my feet. I laid myself 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 ER and told her I was there. She just said, “Okay, 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 6 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, 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 that we are faking. I know I’ve heard it.
In short, think twice before excluding/ignoring friends and family with chronic illness. We need the love and attention just as much, if not more so than other people. Chronic illness by it’s nature is incredibly isolating. Don’t not invite us because we often cancel or say no, or because YOU think we can’t handle us. Let us be the judge of that.
Treat people with disabilities/illnesses the same way you would treat anyone else.
As always love and spoons,