No Sad Faces Please: Talking About Our Disease Doesn't Mean We Want Sympathy
Since I’ve been sharing my life with Multiple Sclerosis online with others, there is always something that concerns me. Not people being judgmental (there will always be those), not folks turning into overly active stalker types (that has happened), and not even that I reveal too much of myself (let’s face it, if you read my work regularly, you know that definitely happens). My concern is one that I think a lot of people who battle a chronic illness worry about. I don’t want people to read what I write and feel bad for me. I don’t want people to hear my story and think, “Oh, that poor guy.” Just because I talk about my illness a lot doesn’t mean that my life is bad.
Clicking the sad face
It may sound silly, but one of the things that made me write this, is related to Facebook but certainly not limited to that. As I went back to look at something I wrote, I noticed a large amount of people had clicked the “sad face” while using the “like” button. Along with that, I will routinely see sad faces as comments on things I’ve written, as well as people saying they are sorry for me. It probably shouldn’t, given the nature of some of the topics I cover, but it really shocks me. I never share my experience expecting or wanting sympathy. I simply try to talk about what I’ve been through in hopes that it will help others.
Why I write
No matter what the topic, whether it’s the severe pain I deal with, my cognitive issues, my best friend passing, my marriage ending because of my disease, or even me having suicidal thoughts, I don’t do it to make people feel bad for me or concerned (and trust me, I know I’ve submitted some things that have even made my editors worry about me, sorry folks). I know I don’t always write a ton of overly positive stuff, but that’s because I feel so many people already do that. There are a ton of very positive people out there and that’s great, but when I was coming here as just a reader (and I still love reading the other writers), I personally was looking for stories that really resonated with what I was going through when times were rough. I basically just wanted to feel like someone else understood, and that’s why I write about the things that I write about now.
A giant weight off
I do admit, writing about my life with MS has been beneficial to me too. Not only is it nice to get some things off my chest, but I get some great comments from folks who’ve read it and can say, “Hey, I know how you feel,” or, “This is what I do...” (honestly, there is a wealth of information in the comments sections of most of my articles and I always encourage folks to go back and check them out). Talking about all of it, whether you write something, or comment on something, or email a friend, or just verbally vent to a loved one, can feel incredibly helpful. Like a giant weight coming off our shoulders. It doesn’t mean we are looking for a solution, we just want to be heard, we just want to get it out. It also doesn’t mean that, even if we share the worst parts, that our life is bad. No matter what I’ve shared, I can tell you, my life is still pretty amazing.
What I want everyone to remember
This is something I want everyone to remember, this isn’t just me that doesn’t want a “sad face,” it’s most people who battle a chronic illness. Just because we are sharing something about our life that may seem sad to you, that doesn’t mean we are doing it for sympathy, it doesn’t even mean we are sad. Sometimes, it just feels good to get it out. Sometimes, we may not really have anything else to talk about. For many of us, battling a disease is practically a full time job, and who doesn’t find themselves talking about their jobs at some point? So please, don’t be sad for me or any of us, but please do listen (or read), because it means so much to us to talk about it and have someone listen.
The holiday season is among us and can be so stressful! Do you experience more flares during this season?