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A person holding a paper of notes looks up as if she is trying to remember something, while a number of speech and thought bubbles around her dissipate and blend into each other.

Failure to Communicate

The Captain in Cool Hand Luke famously said, “What we’ve got here is a failure to communicate.” Lately, I feel like that quote has taken on new meaning in my life with MS. I’ve actually sent videos of it to friends as I reach out to them after a long period of time. I’ve gotten so incredibly bad at not only communicating with people but keeping those lines of communication going. When I finally get back to friends (and family), I like to emphasize the end of the Captain’s quote too, “I don’t like it any more than you, men.” While the circumstances differ than they did in the movie, it’s a fun way for me to admit that I’ve become terrible at keeping in touch and that it isn’t at all intentional.

Brain fog and memory problems

Maybe I’m just a bad person and that’s why I can’t seem to get back to people, but I don’t really think that’s all there is to it. Rather, I have some MS symptoms that plague me and make it much more difficult to maintain communication with friends and family. One of the prime symptoms that causes me problems is that of cognitive dysfunction. People love to use the term brain fog, but it’s so much more than that. Yes, I get foggy, but I also have a tremendous amount of memory problems. Making lists and reminders is absolutely critical to me. If something comes along and distracts me from that, then it can be hopeless for me to get back to someone. I may even think of the person, may even think about how it’d be nice to talk to them, but my mixed up brain may not associate that with actually reaching out and doing it. That’s a tough thing to understand unless you’ve actually gone through it, but it’s a very real issue.

The impact of fatigue and pain

It’s not only the mixed up connections in my memory that inhibit my ability to maintain lines of communication. Other symptoms like fatigue and pain have an impact as well. There are many times where the idea of even sending a text message to someone can seem so exhausting, so impossible. Remember, fatigue is much more than being tired, it’s a prison that locks our minds and bodies away. I know it sounds so simple, right, to send a text message or an email to someone, to even just respond to what they’ve already sent. However, when fatigue and other symptoms set in, it might as well be climbing Mt. Everest, that’s how challenging it feels. Everything becomes limited, at least it feels that way. Am I going to try to make it to the bathroom or engage in a conversation? Sometimes, those are the types of choices we are left with.

The true culprit of communication failure

In the end, it isn’t even one symptom that is usually the culprit of communication failure, it’s several that add up. Whether you have an illness or not, I think once you neglect reaching out or responding, it’s easy for that behavior to become a snowball rolling down a mountain. At the end, it’s pretty hard to stop. It’s hard to reach out to someone after a long time of not talking. It’s even harder when body and mind have gotten in the way. When the other person can’t really understand what we are going through, it becomes an incredible challenge to explain yourself.

A very lonely illness

One of the worst aspects of our disease causing us to be failures at communicating, is that it’s a very lonely illness. It’s a disease that creates problems with maintaining friendships and other relationships. So many of us complain about losing friends because of our illness, this is an example of how many of us don’t put sole blame on the other person. We very much contribute to the degradation of relationships, however, as I’ve hopefully illustrated here, we do have our reasons. If you are upset that you haven’t heard from us in a while or you are upset that we haven’t even responded, please understand that we very much want to. Know that it isn’t as easy as it may seem and know that no one is as disappointed in us as we are.

Thanks so much for reading and always feel free to share!

Devin

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • KimmyK
    2 months ago

    PS, I really need to see this movie.

  • KimmyK
    2 months ago

    Devin,
    You’ve again hit the nail on the head. Your articles have inspired me to do some writing for my community newsletter & get involved in other ways as I can. The past two months have been difficult for me, I’m finding it increasingly difficult to complete my articles on time. I haven’t missed a deadline yet, and don’t plan to but damn it’s really exhausting sometimes.
    You continue to inspire me. Thank you!
    Kim

  • Devin Garlit moderator author
    2 months ago

    Thank you @KimmyK! It can definitely be a struggle, deadlines can be especially difficult to deal with and as you say, exhausting, so exhausting! Best of luck!

  • doctp12
    2 months ago

    That is so very true!
    I have lost contact with so many wonderful friends, isolation, which makes MS so much more difficult.
    It also reinforces depression.
    Miserable disease!

  • Devin Garlit moderator author
    2 months ago

    Thank you @doctp12, it is definitely a massive contributor to depression. I have hopes though, that by sharing this with my own friends and family, that maybe it will help explain myself a bit more. Maybe make them understand more and make that extra effort that I need from them to stay in touch.

  • Karencsk
    2 months ago

    Thank you Devin for putting into words how I often feel. After 40 years since my diagnosis, the symtoms just keep sliding downwards. I love to read, but even that is a chore now. Your writing makes it easier for me to explain my “silence” to friends and family. God bless you.

  • Devin Garlit moderator author
    2 months ago

    Thanks so much @Karencsk, I’m very glad amd hopeful that it will make it a bit easier. I think that sometimes, using other’s words to explain our own situation can have a bit more impact with family than by using our own. It’s good that they can see that it isn’t only us. Best of luck!

  • AnywhereOutOfThisWorld
    2 months ago

    This explains a lot, I’ve wondered at times why I don’t connect with others so well & figured maybe it’s my depression and anxiety disorder which is very possible. I also wondered could Ms be a culprit & after reading this it seems it could be a big factor. My friends & family try to understand Ms I think but I know they really don’t. It’s tough to explain why I am often so tired (even typing this reply takes its toll) that getting back to someone or even reaching out period is a lot to ask. How can anyone without Ms know what that’s like, what we go through – articles like this may shed some light at least, it has for me anyway.

  • Devin Garlit moderator author
    2 months ago

    Thank you so much @AnywhereOutOfThisWorld, everything we do often feels exhausting, everything adds up, and if you haven’t experienced it, it can be extremely hard to understand. I hope that maybe reading someone else’s words might help your friends and family understand just a little bit better.

  • Shelby Comito moderator
    2 months ago

    Hi @anywhereoutofthisworld, thank you so much for taking the time to share a bit of your perspective and experience here. MS takes such a toll on relationships, energy levels, mental health – everything! You are definitely not alone. Some of our community members find it helpful to share our articles with their friends and family members to help them understand, and I welcome you to do so if you think it would be helpful for you as well. Thank you again for commenting – online support comes a little easier sometimes, and we’re here for you whenever you need. – Shelby, MultipleSclerosis.net Team Member

  • bstan
    2 months ago

    Thank you very much for this article. I have a dear friend who has MS. I have been taking her lack of communication personally. Reading this article is truly helpful!

  • Devin Garlit moderator author
    2 months ago

    Thank you @bstan, I am so, so, so happy to hear that!

  • Shelby Comito moderator
    2 months ago

    Hi @bstan, I’m so glad this article shed light on the toll MS can take on relationships! I commend you for taking the time to educate yourself more about MS – it sounds like you’re a really great support and I’m sure she appreciates your friendship so much. Thank you again for taking the time to reach out and share your thoughts! – Shelby, MultipleSclerosis.net Team Member

  • katbow420
    2 months ago

    Thanks for such a great article! I’ve isolated myself from friends and family, which is a lonely and dangerous existence. Your insight shed new light on this. Much appreciated!

  • Devin Garlit moderator author
    2 months ago

    Thank you @katbow420! Maintaining relationships is difficult with MS, a lot of times we don’t even realize why, I hope that by discussing some concrete reasons, it can not only help us do better, but explain to others why we act the way we do.

  • Shelby Comito moderator
    2 months ago

    Hi @katbow420, MS can be the root cause of much loneliness and isolation, something this community gets all too well, unfortunately. We’re grateful you took the time to comment because I know many here feel the same and I hope it’s a comfort to know you’re not alone in this journey. – Shelby, MultipleSclerosis.net Team Member

  • LAHART31
    2 months ago

    Devin,
    Your article struck a chord with me and is so on point! Well shared and so helpful to assist those of us who are not so eloquent in expressing to others. Thank you!
    I have so much cog fatigue that I rarely even come to this site. I’m easily overwhelmed. And if I read something helpful or have a comment, I find I rarely do engage for reasons you just expressed!
    I think of others all the time. I buy cards with intentions of sending but go to write and can’t put my heart on paper. I get distracted and usually the cards don’t make it out. Time has passed, situations changed and I missed the moment.
    Text, email, phone call…all take focused energy and usually lead to more text, email.
    I’m married to a connector/relationship guy. He’s amazing how he relates to others and thrives on connecting people…and I don’t have the cognitive ability to follow conversations and remember details he shares about people. This frustrates him. This article will help me explain. Thank you thank you!

    P.S.
    Somehow I missed the “all the above” option on the survey. I would have selected that, not just “social”

  • Devin Garlit moderator author
    2 months ago

    Thank you @LAHART31, I really hope this helps explain your situation to your husband. I think it has the potential to be very eye opening.

  • Lamm
    2 months ago

    Hi Devin & others reading here today, i can understand how you feel from day to day. I feel like that right now ! I guess it could be worse though. I enjoy reading what everyone writes on here, as someone said it reminds me I’m not alone. That is important for me to remember, it helps me get through each day. Thanks for putting up interesting info.

  • Devin Garlit moderator author
    2 months ago

    Thanks so much @Lamm! I think it very much helps to see that others understand what we’re going through, I think it’s the most beneficial aspect of this site. One of the most consoling things you can come across is the realization that you aren’t alone, that someone else out there “gets it”.

  • Giova
    2 months ago

    Hi Devin
    I’m in tears reading your words. Two years ago after a long battle I was diagnosed with PPMS.
    Since then I have not been able to put into words the affect this pernicious disease has on my cognitive, speaking ability and on relationships with friends.
    You’ve hit the bullseye, thank you!
    All the best
    Giovanni

  • Devin Garlit moderator author
    2 months ago

    Thank you so much @Giova, i hope these words can help explain your actions to your friends and family, and even if they don’t, I hope you at least see that you are not struggling alone.

  • maryewolford
    2 months ago

    I was so happy to read this article this morning. I’m fairly newly diagnosed (last year and a half.) There are things I am discovering that I don’t fully understand. Then an article like this comes up and I’m just sitting here going “yes, exactly !!”
    Then I can share it and hopefully give my family and friends some insight into what I’m going through. As I said when I shared this, if you’re frustrated with me, imagine how I feel …

    I have spent the last several weeks mourning and coming to terms with my cognitive issues. I work in automation and consider myself fairly intelligent. But with all the issues that have been cropping up, I struggle to not feel dumb. I know I’m not. But I am still learning.

    Thankfully I have an amazing team of medical professionals and we are on course to test and learn my cognitive strengths and weaknesses so we can work on keeping my strengths strong and training me to accommodate my weaknesses and work with/around them.

    Thank you for your writing. I always look forward to your articles to remind me that I’m not alone.

  • Devin Garlit moderator author
    2 months ago

    Thanks so much @maryewolford, I’m glad this was helpful, hopefully it helps shed some light on things with your family and friends. Here is another of mine on my cognitive issues, in case you are interested: https://multiplesclerosis.net/living-with-ms/my-cognitive-changes-because-of-multiple-sclerosis/

  • OneAverageWoman
    2 months ago

    For a long time “Failure to Communicate has been an issue for me, not realizing how much effort goes into the simplest things I do.
    I want to get better about beating myself up and even that takes energy (Positive Thoughts Process)
    I work full – time and most times when my day is Over so am I.
    Working on improving stamina with Exercise.
    Household chores or daily living and I’m crawling to bed at night.
    Social Life, rarely is a part of my equation.
    I have an awesome BF who stays in touch and every once in a while gets me out.
    God Bless Everyone.
    Bravo to All of the 77% that manage to do all of the above in the Poll Question MS most gets in the way of……

  • Devin Garlit moderator author
    2 months ago

    Thank you @OneAverageWoman, I feel fore you and completely understand. It’s exhausting. Your story very much reminded me of this: https://multiplesclerosis.net/living-with-ms/survive-not-thrive/

  • Janeel
    2 months ago

    Well expressed Devin,
    I am currently dealing with this issue with a loved one who doesn’t have internet access and wonders why I don’t write.
    My heart is there but my brain/body aren’t cooperating

    Smile it’s just me,
    Janeel

  • Devin Garlit moderator author
    2 months ago

    Thank you @Janeel, it’s so difficult for others to understand, maybe you can print this and mail it to them. I find that, even my own loved ones seem to understand more when reading the words of others.

  • chriscoxrox
    2 months ago

    Very well said! Again !

  • Devin Garlit moderator author
    2 months ago

    Thank you @chriscoxrox, much appreciated!

  • judem
    2 months ago

    Devin, I am such a huge fan of yours! It is amazing to me how you put into words EXACTLY how so many of us feel. You hit the mark every time!! It is such a comfort reading your articles because through your insightful writings emotions, symptoms and struggles are validated. THANK YOU!!!!!!!!

  • Devin Garlit moderator author
    2 months ago

    Thanks so much @judem, means a lot to me to hear that!

  • cdw56
    2 months ago

    Sometimes all you can do is vent. This is a good place to do that. Thank you for the site. I vented last week for the first time since I had MS. It’s hard to stay positive when you’re angry. This Fatigue just knocked me out. It started in 09/2018 and I kept waiting for it to lift but it didn’t happen. I can’t believe this. I just can’t believe this. No desire, If I had to choose to go to the doctor or just stay in bed and die. I would stay in bed. They really don’t help anymore. Once I entered secondary progressive, will I just can’t believe it. I’m too tired to type anymore. I’m glad to hear there are people out there that understand, so many just don’t get it.

  • Devin Garlit moderator author
    2 months ago

    Thank you @cdw56, it certainly does help to get it out sometimes!

  • Legsonstrike
    2 months ago

    You hit the nail on the head on this one!! Love love love your articles!!

  • Devin Garlit moderator author
    2 months ago

    Thank you @Legsonstrike!!!

  • collena
    2 months ago

    I was sort of a hermit before so I don’t think I can entirely blame MS. But what I had before was an ability to think quickly and retain info from one moment to the next. Mostly I just get frustrated with myself over those things, but the people close to me invariably take it onto themselves (wrongly).

  • Devin Garlit moderator author
    2 months ago

    Thank you @collena, I most definitely know how you feel.

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