If there is one question that those with a chronic illness like multiple sclerosis hear a lot, it’s “How are you feeling?” or some variation of it. It may seem like something so simple, so common, but it’s something that stirs up mixed emotions for someone like me. At times, it can be an extremely positive measure, that I’m very thankful for. However, other times, it can leave me feeling a little down depending on the circumstances. Regardless of how it makes you feel, it’s a question you are going to encounter often and it’s good to be prepared to hear it.
Having someone ask how you are feeling is a good thing. It shows they care and are concerned. It shows they realize that you have an issue and that you probably don’t feel great much of the time. At the very least, it shows some level of interest and knowledge about you, even if it’s just small talk. I hear it a lot, it’s often one of the first things that people say to me when they see me. I’m fairly open about my struggles with MS, so it makes sense. I’m very happy that they recognize I have issues, even if I don’t look like I have anything wrong with me.
So if it’s such a good thing, what’s the problem? Well, I get asked it a lot, at least once or twice a day, and I imagine it’d be a lot more if I weren’t on disability (and so don’t get to leave the house often). Still, that’s great right? People caring about you is great! Except, I get the question so much, I start to feel like that is all people think about me. There is Devin, who has multiple sclerosis. It feels like it’s what defines me. For many people, I suppose it is. Now, of course, I write about my MS and share what I write and people ask me questions and I’m always willing to talk about it. I want to talk about it, I’ve chosen this. I’ve decided to use my experience with the disease to try to help others by spreading awareness any way I can. The thing is, I was getting asked about how I was feeling way before I started writing. I’m sure many of my readers get it often and that’s what I want to address here, how that may make many people feel.
In the days before I was as open and vocal about my MS, the days before I wrote about it, when someone would ask me how I was feeling, I’d have such mixed feelings. A big reason for that, I think, is that I know it’s just conversation, small talk. Sure, sometimes the person genuinely wanted to know, but I often wondered if they were really genuinely ready for a true response. Like many of us, I would (ok, I still do this), not be entirely truthful about it. I’d give the old, “oh, pretty good” or at most I’d say something along the lines of “oh you know, good days and bad days”. Basically a short, polite answer to further the conversation and find a new topic. Truth is though, every time I’ve been asked, I do for a brief second think about all the issues, all the falls, and all the pain. I think to myself, wow, what a loaded question it is to ask someone like me how I’ve been feeling.
Aside from me usually just trying to be polite, I feel like there were times where I probably turned bright red because I felt a bit embarrassed. As I mentioned before, I don’t want to be thought of as just my diagnosis. Just the guy with MS. No one with a chronic illness wants that. I admit, I’ve probably given all of this way too much thought. It’s just conversation, small talk even. It may sound crazy, but I have even felt bad by just giving a “pretty good” response because I knew it was a lie. Not only because it was a lie, but because I desperately wanted to tell someone. I wanted to talk about how rough it had been, I wanted to talk about the pain, the many falls, the crippling fatigue, and the brain fog.
So what changed for me? Well, I do still occasionally have mixed feelings when asked how I’ve been feeling, but then I remember that some people do really want to know. I also try to recognize when it’s just conversation and accept that. I have tried to be more open about it, because as I’ve said, I’ve realized that MS is a part of me, not all of me, but a not insignificant part, and that’s OK. A big help for me has been connecting with other MS Warriors though. Communicating with other folks who share similar problems has helped me because it’s given me a chance to talk about it with people that truly understand. I can’t overstate how important that is to me (although, it is not always easy to do).
With everything I write, I always know there is a chance I’m the only one who’s had these thoughts. As I have found out though, there are usually many folks out there that have felt the same way I have, and I’m sure that’s true this time too. So I’d love to hear everyone’s thoughts on this. Do you have positive, negative, or even just mixed feelings when someone asks you how you are feeling? Regardless of how you feel, I always love to see everyone’s perspective, so feel free to comment and join in the conversation!
Thanks for reading,