No Sad Faces Please: Talking About Our Disease Doesn’t Mean We Want Sympathy

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.

Thanks for reading!

Devin

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Comments

View Comments (24)
  • MarveleeC
    2 weeks ago

    Devin, everything you write resonates with me and this most recent posting does it again. I want to GAG when people say things like “you’re such an inspiration to me” or “you’re my model” or “I’m so proud of you” I don’t do what I do as a person with MS to be an “inspiration” or “model” or make people “proud” of me!!! I just live my life with MS the best I know how! And I certainly don’t want people to feel sorry for me! It’s just me, Marvelee, doing my level best to live one day at a time.

  • Devin Garlit moderator author
    2 weeks ago

    Thanks so much MarveleeC! Very well said!

  • Azjackie
    2 weeks ago

    You are very right again. People with an illness don’t want sympathy.

    Why is it people afflicted can’t relieve their pressure? People without an active illness blow off steam all the time. Traffic, work, spouse, children, vehicle, an appliance…Heck they’re treated without sympathy. But by golly as soon as someone with an illness wants to “get it out” they are treated like the proverbial “txxx on a stick”.

    I think it would be funny to reverse the circumstances.

    My weird sense of humor.

  • Devin Garlit moderator author
    2 weeks ago

    Thanks so much Azjackie! I love that you compare it to blowing off steam, just as others due with things like traffic, etc. It’s an everyday thing for many of us, just as those things they vent about are.

  • katrina
    2 weeks ago

    Ah yes. One of my co-workers changes his voice and tilts his head all in a different way when asking how I’m doing and he means the MS. A way that says “you poor thing”. I know he means well but it irritates me a little inside. now I give a short answer and move on to avoid any additional sympathetic gestures. Once we open up to people we have to take the good and bad.

  • Devin Garlit moderator author
    2 weeks ago

    Thank you katrina! I think so many of us know that head tilt all too well!

  • CatDancer
    3 weeks ago

    Devin, I don’t see your articles as negative or sad. None of us wants to go through this but it’s important to vent in a truthful way and that’s one of the reasons I read your writing. It hits home.
    Sometimes when I open up to certain family members and my struggles they’ll say, “don’t feel sorry for yourself, it’s not helping the situation.” I don’t really feel like I’m feeling sorry for myself. But I do say that I’m sorry for opening up; why? People talk about their struggles to me and I don’t say that to them. Who knows why they say those things. Thanks for being honest.

  • Kritty
    3 weeks ago

    Another great article Devin, keep them coming!!! I also do a lot of writing because some days I just need to unload my feelings, thoughts and things I’m struggling with. Probably because of the very point you made in this article. Like you, I’m not looking for sympathy or advise. Sometimes I like to go back through what I wrote and read them again. I find lots of positive things in my writings as well as those that frustrate me. It’s therapeutic in many ways as well as a healthy way to reflect without having to involve anyone but myself, that is, unless I choose to.
    I have never had a FB Account. Unfortunately, FB seems to be one of the worst places to talk or discuss anything. I find people are too judgemental and like to interject their “opinion” even when no one asked for it, which does not help me. You do make a difference. I pretty much can relate to just about everything you write about and “yes” I do print out the ones I feel are beneficial to show and share with my family and friends.

  • BlessedwithMS
    3 weeks ago

    Total bull’s eye. I *hate* the knitted eyebrows and looks of pity when I tell someone that I have MS. In fact, I stay mostly confidential except close friends and family bc I can’t stand the assumptions about my situation — what I can and cannot do. I say in my own blog — Blessed with MS — that I want to punch them in the face. That’s just the truth, as horrible as it sounds. 🙂

  • Michelleclarke
    3 weeks ago

    Great comment .I totally understand thanks

  • KMcCat
    3 weeks ago

    Great article. I can absolutely relate. I used to share more on facebook, and in general, for the sake of spreading information, and so my friends and family could have some insight into why I am not as social as I used to be. Also, after experiencing how detrimental it is to ignore health symptoms (for 10+ yrs I did), I felt the need to warn others not to do the same. The sad face responses & sympathetic comments became too much, and then I hear the gossip on the flipside, doubting my reality. My intentions were lost on most people. I will probably share this article though!
    My personal experience with other people’s reactions to MS is mostly polarized and stereotypical. I get both the worried overreactions and the thoughtless comparisons to other people with MS, whom are fortunately doing well or are still able to hide it well.

  • KMcCat
    3 weeks ago

    Darn. Can’t share this for one reason- I hate the word “disease” in reference to the anything non- communicable and it’s part of the title. The modern connotation doesn’t fit. I prefer to use the word “condition”.

  • ShelbyComito moderator
    2 weeks ago

    Thanks so much for sharing your perspective, @KMcCat! Certain words can certainly have powerful connotations, and I appreciate you taking the time to share your thoughts. Best, Shelby, MultipleSclerosis.net Team Member

  • Julie
    3 weeks ago

    This is why I rarely share things on FB. I don’t want people to be sad I just want to share what I’m going thru at the moment or something I heard or saw or even a help tip for another MS’er. Down with the sadface!

  • Nancy W
    3 weeks ago

    This is right on Devin. I recently read an article after a woman on the news said she did not want prayers and thoughts. What people want is acknowledgement.

    We want to get our thoughts and feelings out and have them acknowledged by others. That is what your writing does for me. It is comforting to know I am not alone in this disease.

    Sometimes positive articles can be depressing because I can think, “Why aren’t I doing that.”

  • Machille
    3 weeks ago

    Dear Devin, Thank you for writing this article. I totally understand so I rarely write about MS. I have friends that understand my shortfalls and are very supportive. I have family that don’t understand. My family sees that I have a good day and feel like I should be like that all the time. They just don’t understand when I am having a bad day or experiencing bad symptoms. When I feel like I am in a fog, or having cognitive issues, they say things like I am a dumb blonde, quit being stupid or what is your problem. I have a moderate processing issue that is frustrating for me. Friends understand. Family doesn’t. My friends have even researched MS. My family never have. I’m not looking for sympathy. Just venting a little. I totally understand how you feel.

  • Shelley D.
    3 weeks ago

    Kudos, Devin, on another great & REAL article. I think that’s why I like this site so much! Before I found it, all I seemed to read was the “MS doesn’t have me” type. After I saw the video of Annette Funicello (sp?), MS became a MonSter that was in me! Sugar coating this disease doesn’t do any favors to anyone!

  • buki6
    3 weeks ago

    Devin being real about the disease is needed I seem to get to extremes to my sharing of MS. Usually the first response is I’m so sorry is there anything I can do? My response is find a cure. After I know someone for awhile it’s all your so strong I am amazed at what you do. I guess my point is I would like a happy medium. I doubt that will happen.

  • MargieF50
    3 weeks ago

    Devin, I appreciate your writing and your point of view! As an M.S.er and someone who has been in pain for decades (literally) I have most of all benefited from writers who speak openly about pain. Early on, a fellow sufferer gave me some advice that lead to a few years of being pain free and able to continue being employed.
    I may express sorrow, too, because I do know what the writer is living through and wouldn’t wish it on anybody!
    Keep up the honest, gritty, pull no punches work! It is appreciated and often the most helpful!

  • meghmacn
    3 weeks ago

    Yes! I am tired of every disability essay I publish getting a slew of :(. Read, learn, and discuss, but spare me your pity.

  • buki6
    3 weeks ago

    kudos

  • angelag
    3 weeks ago

    That’s always been my worry as well. I write a blog as a way for me to understand and accept my MS and mental health but sometimes I wonder if people think it’s for sympathy or something…anyway thanks for writing this

  • mascha
    4 weeks ago

    I like your Armand it somewhat made me laugh,sorry.
    I don’t like overly positive articles because I feel they are not real. It’s easy to say be positive but when facing with a lot of symptoms that’s not always so easy. So I like your articles. They are straight to the point and they are real.
    When I read your article it feels real, and not sad. I can relate but I can never explain and that’s why I sometimes save your articles to show my husband if he doesn’t understand.
    sorry couldn’t help myself.

  • Devin Garlit moderator author
    3 weeks ago

    Thanks so much mascha, appreciate hearing that!

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