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Fibbing When I Don’t Feel Well

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.

I would rather make 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.

Thanks for reading!

Devin

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Comments

  • lcal
    12 months ago

    I don’t have to read this yet to know by the title that it’s absolutely spot on. I’ve been consciously trying to let it be what it is and too bad for who doesn’t like it because I’m just feeling very tired and angry lately for feeling very tired and angry
    Lisa

  • Devin Garlit moderator author
    12 months ago

    Sorry to hear that Lisa, hang in there and thanks for sharing, many of us feel just as you do, you certainly aren’t alone.

  • Janus
    12 months ago

    Yesterday I went to my niece’s wedding. Thank the Lord that the wedding and reception were very small. After about an hour at the reception I HAD to leave. My eyes felt like they were in a pinball machine and I could feel all my leg strength making a hasty exit through the bottom of my feet. I had a half hour drive ahead of me, and we are extremely rural, so I knew after a short time in the car with the a.c. crancked up, I would be fine. However, whenever something like this happens, no one understands that when you say you have to go, it means NOW. I know that this is a bit of a departure from the subject at hand, (sorry Devin!) but I have read nearly all of your posts. My husband even printing a couple off to send to family members so they will better understand what we have to deal with. The above problem is one I can’t seem to impress on anyone. You may as well say that you’re fine! I felt awful to have to leave, guilty as well, but I knew I had to get home while I still could…thanks for all your insightful posts Devin!

  • Devin Garlit moderator author
    12 months ago

    Thanks so much Janus! I appreciate you sharing your experience too, it’s one that I’m sure will resonate with many that read it, it certainly does with me.

  • rnhviolin
    12 months ago

    I am with you Dorry, I use a therapist primarily for my MS. A safe place to vent, and get helpful feedback. I feel like I can easily wear out my family and friends talking about MS and how it impacts me. I hate the line, “But you look so good”, I have heard this dozens of times, and it is so untrue a good deal of the time. Devin thanks for writing you thoughts down.

  • Devin Garlit moderator author
    12 months ago

    Thank you rnhviolin! I always highly recommend people with MS, or any chronic illness, have a therapist or other mental health professional they can talk to. I believe a mental health professional is every bit as important in fighting this disease as a neurologist, or speech or physical therapist!

  • Dorry
    12 months ago

    It is sad Devin that one cannot be themselves. They can’t say when they are in pain and why they cannot go out, or be at a certain place because people don’t understand and then you are forced to wonder what they think.
    Quite frankly STAY FOCUSED on you and what you are going through and stop worrying about what other people think or it will drive you to an early grave. BE YOURSELF. The only sad fact about saying you are not well is that people will stop asking you. THAT HURTS. Even if is a legitimate reason for not being somewhere. Nothing worse than being in pain most of the time and you don’t want to be around people. I suffer a lot of nerve pain and it is like an electric voltage running through my body. I don’t want to be around anyone then. I feel they will get an electric shock if they touch me. I know they won’t, but this is what it feels like.
    I walk with 2 canes and I say nothing. Because people can then make up their own minds that I have a disability. It is the invisible that one can’t see that receives the worst prejudice. If I felt really unwell and I had no place to VENT. I would pay to see a counsellor who would give me the time of day, and respect so I could feel better about life and not let it build up and make me more ill. But sadly this is expensive and not many people can afford to do this. We then run out of options of how to move forward and make life better for ourselves. Nice to be able to have people with us on this journey who are REALLY WITH US.
    I hope you have better days ahead and keep posting and receive encouragement to pick you up for yet another day. Best wishes.

  • BBarr
    12 months ago

    I wish I could have said the same out loud. Glad you wrote it down so I could read it. Out loud.
    Thanks!

  • Devin Garlit moderator author
    12 months ago

    Thanks so much BBarr!

  • Lina
    12 months ago

    I always say I’m not feeling well. Lately it’s been everyday. I’m trying to get used to living day by day. I don’t really get questioned about it. Most people I know already know my condition. Those that don’t get it I tell them why. They don’t get it so I briefly explain why. They can either except it or not like me. What can happen? They never invite me or think I’m making excuses. I say bye bye. If you don’t get me than you don’t care about me & I don’t need people like that. I don’t like feeling the effects of the illness but slowly I’m getting it. Most times I wish I knew more people with ms because we can talk about it and support one another.

  • Nicole.B
    12 months ago

    I understand completely. I’m going through the same thing & just don’t know the best way to handle this.

  • LuMed
    1 year ago

    OMG! You read my mind. I do the exact same thing. I NEVER say I don’t feel good because I always feel like Debbie Downer. When everyone is having fun I don’t want to bring down the vibe. I also feel like if I say I’m sick I have to give a another tutorial on what MS is. It feels sometimes like all we do is complain. I talked to a therapist about it once and even she was like “but why? Just tell them you don’t feel well. Who cares?” Yeah, I didn’t go back. If you ever figure out a solution for this one, please share!

  • Devin Garlit moderator author
    12 months ago

    Thanks so much LuMed!

  • Mascha
    1 year ago

    great article! This is how I exactly feel. I almost feel people don’t believe me and that I’m making excuses. My symptoms too,come on instant. I can be fine doing something fun,and all of a sudden feel totally unwell.
    I am tired of being sick all the time.
    I’m happy to read this because I don’t feel I’m the only one with this issue.
    Thanks

  • lcal
    12 months ago

    You just nailed it. Feeling like ppl think your making excuses because your fine now but not in 15 minutes
    It’s such a horrid emotion to feel
    Like I responded to Devin (without yet reading article) I’m tired and angry if this entire circle. So I’ve been trying very hard to rid myself of the guild and emotions of having to always explain myself or lie because ppl will accept it easier than our truth
    *^%# it. And if someone doesn’t like it I’m sorry.
    Lusa

  • Devin Garlit moderator author
    12 months ago

    Thank you Mascha! You are most certainly not the only one!

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