Fibbing When I Don't Feel Well
Last updated: April 2022
Excuses. They’re something that someone living with a chronic illness like Multiple Sclerosis is often very known for offering up. With one of the main side effects of living with this illness being the cancellation of plans, it’s no wonder that we find ourselves constantly explaining why we can’t be somewhere. Explaining, giving excuses, whatever you want to call it, more and more, I find myself wanting to avoid the truth. The truth being that my body is failing me, and I simply can’t do what I promised I would do. I’ve now caught myself being less than truthful when explaining my absence, because I’m so tired of saying the same old thing.
My MS social life: Making up an excuse
Am I really confessing to lying to friends and family? Well, I guess so, occasionally anyway. I suppose I think of it as a harmless little “fib”. Simply saying things like, “I have other plans” or “I forgot I had something else to do”, excuses like that. I get tired of constantly having to admit that I’m suffering from some MS-related symptom. I’m tired of acknowledging to others that I don’t feel well. So much so, that, at times, I’d rather sound incompetent or disinterested in them than having to, once again, for what feels like the trillionth time, admit that I’m not feeling well.
It's more for me than them
There will be some that read that and say, “That’s ridiculous, just tell them you don’t feel well, they know you are sick”. To which I say, sometimes when I do it, it’s more for me than them. Frankly, it sucks having to always say you don’t feel well. It already isn’t pleasant feeling bad a lot of the time, but having to constantly admit it somehow makes it worse for me. It’s kind of an extension of responding that I “feel fine” when people ask me how I’m feeling. I pretty much never feel “fine”, I’m not even sure what “fine” would feel like anymore. I don’t see that as a lie, just as a way to get through with some social graces. Giving an alternate excuse to why I have to cancel plans or why I can’t show up falls along the same lines to me. The end result is the same, I can’t make it, but at least maybe they aren’t thinking of me as Devin, the guy with MS, at that moment.
Perceptions of others
While I obviously hate explaining that I don’t feel well because I say it so much, I also worry about the perceptions of others. I think most people don’t understand how hard it is to have symptoms that are often very invisible. The number of people who think we are fine because of our appearance really messes with you. At times, I feel like I can’t say I’m sick. I picture people rolling their eyes whenever I break down and admit that I’m not feeling well, yet again. I worry that they don’t understand how quickly symptoms can be triggered. That I can appear normal and fine, but still be feeling terrible on the inside. That I can be feeling wonderful one minute, and absolutely awful the very next. I still worry that people don’t get it. They are friends and family, so I hope they understand, but regardless, I still worry about it. After nearly two decades with the disease, I’ve had enough experiences to make that a concern. I’ve had enough “but you look so good” experiences, that the concern is now stuck with me.
Lesser of two evils
So yes, I don’t always share that I’m not feeling well. I hate sounding like a broken record and I hate that some people may not believe me. It’s a bad habit that I’m trying very hard to break. At the same time, I know it’s probably been helpful too, if not for those that I’m talking to, then to me. Explaining that I feel awful so much, gets pretty old after some time. I guess maybe there are even times when I’m the one rolling my eyes after saying it. So yes, I occasionally tell a little fib, rather than explain how I feel. It sometimes feels like the lesser of two evils.
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: