The Mental And Emotional Fatigue Of Constantly Canceling

The Mental And Emotional Fatigue Of Constantly Canceling

Living with an unpredictable chronic illness like Multiple Sclerosis often means that no matter how prepared we are, we will end up having to cancel plans. Even though I’ve lived with MS since 2000 and have had to bow out of numerous commitments over the years, it never seems to get easy for me.  Not only is it not easy, it starts to wear on me.  The sadness, loneliness, and (especially for me), the guilt, of making commitments and then breaking those commitments starts to weigh me down.  Not only does it get to me, I’m sure that my friends and family also get mentally and emotionally fatigued by the constant and often last minute changes I have to make because of my disease. Like many things I write, I have to point out that this can be true with many chronic illnesses (I find I have a lot in common with others who suffer from things from Crohn’s, Lyme, diabetes, migraines, IBS, etc.).

The problem with plans

For those who have MS or know someone with it, the fact that plans can suddenly get canceled is nothing new. I think most of the other contributors on this site have done at least one article about the need to cancel plans.  That’s just how prevalent a problem it is among the chronic illness community.  In the case of canceling plans, practice doesn’t make perfect though. I still feel deep regret every time I have to reach out to someone and say I won’t be where I said I would be.  My close friends and family all seem to understand and generally feel bad for me. I’m lucky, because I know not everyone has that and canceling so much can be a real strain on relationships.  Even knowing they understand doesn’t make this common task easy. It’s embarrassing and frustrating.

Bottom line, canceling plans isn’t pleasant.  Missing out on something, whether it be something big like a wedding (the long nature of them and the travel involved in weddings is especially hard on me, I even left my own wedding early because of MS) or small like meeting friends out, can stick with me for a while.  Missing out on any one of these moments is tough, but when these missed times start to add up, it can really take its toll.  Mentally, I’m worn out by it.  I start to feel like I should never even make plans because of the high probability of breaking them.  I missed both a wedding and going away party for good friends this past weekend, and it made me want to retreat and hide.  Again, I’m lucky, all of these people understand.  I’m the one who has difficulty accepting it.  It’s very easy to say, well, “I’ll just be a hermit, why even try to maintain a semi-normal life?”.

It’s difficult for us, but it’s hard on our friends and family as well.  It’s no wonder that so many battling chronic illness tend to lose friends in droves.  Even if you understand, and few do, it’s hard to accept that someone keeps cancelling on you.  That someone keeps missing not only the big, but also the small times.  That fatigue of cancelling hits them too and eventually good friends become acquaintances and then finally just a name we see pop up on social media.  The sad thing is, no matter how understanding someone is, this can still happen.  As connected as we are these days, with our smartphones and social media accounts, none of that can replace actually being there for those special moments.

FOMO and guilt

As bad as my fear of missing out is, and as sad as I am explaining to people I’ll be missing out, that all pales in comparison to the biggest feeling all of this gives me: guilt.  I feel guilty when I cancel plans.  That’s when I start to think that it’d be better to not get people’s hopes up, than to plan and cancel.  I also feel guilty because many of these events also include my wife and she either goes alone or doesn’t go at all.  Even when she goes, I feel so bad and guilt-ridden that she has to go alone.  I find myself wishing I had some sort of surrogate that could go with her in my place.  So I know she’d have someone to go with (not that she needs it, she’s pretty independent).  I hate thinking of people seeing her arrive and thinking that she got the short end of the straw by being with me.  I know that’s probably not what happens, but that doesn’t stop me from thinking it.

I have no solutions to any of this, other than to recognize it, and to talk to your friends and family about it. With so many problems we face, awareness always seems to be the most effective answer.  Educate yourself, family, and friends about MS and its symptoms and triggers.  Help people understand why you cancel so much.  Explaining to them will help you deal with it too.  When it all starts to weigh on me, I like to hit up one of my friends who has MS and understands.  It’s helpful to me to vent to someone else who experiences all of this.  That’s just one reason I value everyone else I meet with this disease.  We’re all in this together.

Devin

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

View Comments (35)
  • SiouxH
    2 years ago

    Thanks for posting this! I have a milder version of MS, which means that my need to cancel is less frequent, but the feelings are all the same. I get pretty depressed about it. Nice to know I’m not alone – lifts my mood a bit:)

  • mbgyulay
    2 years ago

    Thanks for your post! You explained this so well. Is it ok is I use this to explain why I’m not consistent going to things?

  • Devin Garlit moderator author
    2 years ago

    Thank you mbgyulay ! Of course, please use it and share as much as you’d like!

  • Blessed1
    2 years ago

    I couldn’t agree with every word of this post more. It is like you pulled these words right out of my brain! I have always been the “goto” person for everything, the “plan maker”, the “matriarch” of my circle. I feel like I have taken a back seat, and crawl up in an imaginary fetal position when someone asks me to make a plan requiring a deposit, or commitment. Without explaining my “fear of not feeling tip-top that day”, I turn into some sort of mental marshmellow and can’t come up with a straight answer. Thank you for bringing to light – That WE are not alone!!!

  • Devin Garlit moderator author
    2 years ago

    Thank you Blessed1! We are most certainly not alone!

  • New to me
    2 years ago

    Devin: You are not alone, your post is a mirror of my life spot on, for the first half of my life I used to be “Mr dependable” a man of my word, even if the commitment was spoken during a night out of partying I showed up and kept my word, in the beginning I was able to keep 90% of my commitments, then I avoided making any long range plans but now I avoid them all because tomorrow my body might not be as cooperative as today, like you I have missed so much in the past few years, it has now negatively affected my work missing more and more days and no longer being able to be that “go too guy” who can fix or solve any problem because of physical and fuzzy brain constraints, (started the paperwork for perminate med leave) I have turned into a recluse not even wanting to answer the phone because someone might be calling about an event/plans asking those I know to simply text me because I have bad cell service! I am tired of doctors an pills all who give you a blank stare if you bring up wanting to be more dependable, summer is never a good time, lots of parties an more “sorry not going to make it”… Hang in there being able to talk about it helped thank you..

  • Devin Garlit moderator author
    2 years ago

    Thank you “New to me”! Sorry to hear you have this experience too! Keep fighting though, I try to use it as a chance to raise awareness. Particularly in the summer, when I’ll cancel and say, you know, because the event is outside, and then I’ll share this with them: https://multiplesclerosis.net/living-with-ms/some-things-wish-people-knew-temperature/

  • Dragon Lady
    2 years ago

    Hey Devin – I just read your post on missing events due to MS. I agree whole heartedly! I have the same feelings. Three days ago I had to miss a friend’s graveside funeral service due to the heat. The time of the funeral was 10:00 a.m. I live on the Gulf of Mexico in south Texas and even that early it was way too hot to attend. I missed my final farewell to my friend due to MS. She was also my husband’s first cousin and he had to go alone and make excuses for me. I guess he must be used to it by now. Let’s face it folks, MS is a master thief and it just keeps robbing us of our abilities little by little. I sometimes make an inventory just to let me know, and be thankful, for what all I have left. We must remain positive and be grateful because thingscould always be worse. Best of luck to you Devin!

  • Devin Garlit moderator author
    2 years ago

    Thank you Dragon Lady, sorry to hear that this master thief has gotten to you too! A 10am event in south Texas sounds pretty unbearable! I know I’ve been oversharing articles like this lately to make sure my friends and family understand: https://multiplesclerosis.net/living-with-ms/some-things-wish-people-knew-temperature/

  • Dragon Lady
    2 years ago

    Hey Devin – I just read your post on missing events due to MS. I agree wholeh heartedly! I have the same feelings. Three days ago I had to miss a friend’s graveside funeral service due to the heat. The time of the funeral was 10:00 a.m. I live on the Gulf of Mexico in south Texas and even that early it was way too hot to attend. I missed my final farewell to my friend due to MS. She was also my husband’s first cousin and he had to go alone and make excuses for me. I guess he must be used to it by now. Let’s face it folks, MS is a master thief and it just keeps robbing us of our abilities little by little. I sometimes make an inventory just to let me know, and be thankful, for what all I have left. We must remain positive and be grateful because thingscould always be worse. Best of luck to you Devin!

  • Flossie61
    2 years ago

    Very timely post! Especially with summer upon us, when heat can also be a trigger. I was down in the dumps for cancelling attending an event I was supposed to be at yesterday.

  • Erin Rush moderator
    2 years ago

    I am sorry you were feeling down for having to cancel plans, Sallylou61! I hope you feel less alone knowing you are not the only one having to change or cancel plans due to MS. Thank you for sharing and I hope you are feeling more upbeat today. Best, Erin, MultipleSclerosis.net Team Member.

  • Ewing48
    2 years ago

    This hit me in the face! I had to cancel an evening with my son, daughter in law and grandchildren last night. Was so fatigued, I knew I would never make it. Guilt takes over and then depression.

  • Nancy W
    2 years ago

    I am commenting again because I have to cancel my plans for this weekend. I Have a cold and am sick and tired of having to spend a day in bed after being busy. I was supposed to meet my extended family at a campground tonight, stay in a cabin and come home tomorrow night for a wedding on Sunday. It is a 2 hour drive back and forth., not to mention planning and packing food and supplies for staying in a cabin for one night. I have such mixed feelings. One is disappointment, but I am also relieved that I don’t have to do everything involved in getting ready to go.

    I am glad your article came along at this time so I know I am not the alone in this.

  • Toledo34287
    2 years ago

    Miriam, it sounds like you’ve done all you can. Now your family needs to step up to the plate, or not. Be kind to yourself and let them deal with it. Easier said than done. I feel for you. We are so finely tuned in to even the slightest tone or statements whether intentional or uniformly made.

  • Pip Allon
    2 years ago

    Totally understand you on that…. and they they don’t REALLY
    understand what’s going on……….. it’s more of an irritant, at least in my case.

  • Toledo34287
    2 years ago

    Another timely article. All my friends have fallen awqay. No wonder I’m so lonely, and alone.

  • Pip Allon
    2 years ago

    Once again, I can only agree on that. Everybody is busy, busy, rushing past and I wonder where the day/month went………
    Are you in a any sort of counselling group? If you can find something nearby……give it a try.

  • Miriam S
    2 years ago

    Hey Devin. Your posts sure hit the nail on the head for me. I know this one sure did.

    I am constantly wondering which way is best. Even though I have tried both it still seems I have one child who is always upset with me about not being there for her and her daughter like she thinks I should be. This breaks my heart as she has my only grandchild. Thankfully my granddaughter is a very understanding and loving child and always consoles me if it happens that I can’t do something.
    However, her mother is not so nice. She makes snide comments when I do show up to something I’ve told her I’d be at such as, ‘oh you really came’, ‘I didn’t save a place for you because I didn’t think you’d really show up’. It really hurts but I just don’t know what to do.

    I’ve sent her articles to try and show her what MS causes and the problems I face that cause me to have to cancel but it don’t seem to have helped. Some times I think it is just because of her past with her father and now this happening she just thinks everyone is going to ditch her like her dad did. So, I’m just caught in s no win situation.

    If anyone has any ideas to help me I’d sure like to hear them.

  • Pip Allon
    2 years ago

    I believe in letters. Send her a letter telling how you really feel……It can’t get any worse.
    I did to my daughter in law, she never mentioned reading it but, there was an obvious change the next day.
    Try it.

  • Devin Garlit moderator author
    2 years ago

    Thank you Miriam, so sorry to hear of your situation. I have dealt with many a snide remark from family members over the years too. Sometimes, even those that do understand, still act this way. That said, it does sound like she has some others causes there because of her father. Reassure you want to be there and explain how her behavior hurts. You have a disease and you’re doing the best you can. Sit her down and talk about, when it’s not the day of an event, explain what’s happening it’s like all those times when you cancel. Have a real heart to heart and talk about, explain how much you want to be there and why you can’t. I wish you the best of luck, sadly, this is something so many of us deal with!

  • tfs
    2 years ago

    I think you hit the nail on the head about her trauma surrounding abandonment. I would just reassure her that it is not that you don’t want to be there. It is about the symptoms you are experiencing surrounding your neurological disease. I would ask her if you can spend some time later when you are not struggling with the symptoms. Perhaps just one on one. Or a phone call at a mutually agreeable time. Or a brief phone text. That might help. You can’t change your daugher – and perhaps she IS just being a bitch. In that case, you concentrate on that beautiful granchild and try to accept your daughter as she is. She has some work to do on her own issues. Remember what you stated: “my granddaughter is a very understanding and loving child and always consoles me if it happens that I can’t do something.”

  • Yoshitail9
    2 years ago

    Miriam S
    I would ask your daughter if she would change places with you for a day….An hour…or a minute !

  • tfs
    2 years ago

    Isolation. Deadly. Increases depression. so………… We have to navigate that balance and set realistic boundaries for ourselves. I must admit I am tired of the limitations. I have an out-of-town reunion at the end of June. Nervous. No one will say, “You look exactly the same.” I will probably go one day early and settle in. It’s a lot of prep for a simple dinner, but it is worth the effort. If I have to cancel, I will do it and try to feel the disappointment without blame. I know I won’t feel blame. I am going because it will be good for me. I am a true introvert, but feel better when I make the effort to socialize. I choose the outings/events carefully. As usual, Devin, lovely to read your page.

  • Devin Garlit moderator author
    2 years ago

    Thank you tfs, good luck with the reunion! Going a day early to acclimate is usually a great idea for me too. A lot more work, but necessary these days. You are 100% right about isolation, that’s something that really gets to me a lot and just makes everything worse! Thanks so much for commenting!

  • Cathy
    2 years ago

    This has been my life for many years now. I was diagnosed in 1985. Married for four years, with a two year old and an infant. The next twenty years was tough trying to raise my children, be a good wife, homemaker and chef. I tried not to miss their soccer, baseball, football and basketball games. It wasn’t until I started having the problems with incontinence that I realized my life was changing It happened once in front of everyone on line at my local food store. It happened while on the school bus, when I had volunteered to be one of the moms who went along on the class trip. I tried to just accept it. Wore Poise pads and even adult diapers, but even then sometimes even they wouldn’t work. I eventually stopped going to a lot of social events and ended up losing a lot of friends who didn’t understand. My children are now grown, I am still able to use a walker and wheelchair for long outings. I try not to cancel any event in my immediate family and I hide my disability well. I look great on the outside! This week-end I am travelling three hours away from home to attend my son’s wedding. The thought of being up on the dance floor in front of everyone terrifies me. My son has assured me all will be fine, he will not let go of me. I am terrified of all the “what ifs” that could happen but I have no control over them, so I have gone so far as to pack another dress, just in case, and I am determined to have fun. I just wish everyone understood what it takes for me to be able to “make it” to an event. If they only knew!

  • Pip Allon
    2 years ago

    You are a true hero

  • Devin Garlit moderator author
    2 years ago

    Thank you Cathy, I wish you the best of luck at your son’s wedding. Weddings have been especially tough for me for multiple reasons. I know the what-ifs can be enough to drive you insane, so try to get them out of your mind. Sounds like your son is awesome. If he’s assured you, rest assured that everything will be ok and that no matter what happens, it will still be a great day! You are 100% right though, if people could only see what we go through to make it somewhere!

  • MickeyLou
    2 years ago

    Wow Devin. You hit the nail right on the head… so to speak. Well said. I could have written this myself. I guess we are all in the same boat.

  • Devin Garlit moderator author
    2 years ago

    Thank you MickeyLou! There are certainly many of us in that boat!

  • J R
    2 years ago

    Just say “no” is my motto now. Just thinking about all the hoops to get through to attend anything exhausts me.

  • Nancy W
    2 years ago

    I can identify with this, especially lately. I have ‘invisible’ MS. My latest weird symptom has to do with my throat. I developed a cough in January. It hits me like a fit, accompanied by tearing eyes and running nose. After trying all the conventional treatments, I had a barium swallow that showed a weakness in my swallowing that could be causing the inflammation in my throats and thus the cough.

    Now that I know that there is an MS component to this, I have been very cautious about what I commit myself to. If I try to push myself and become fatigued, the cough gets worse.

    Before this, I would rarely cancel plans. I would go, and if I got fatigued, I would excuse myself and rest or leave early. Then I would rest the next day. But, I learned a few weeks ago, that if I try to do that, my cough gets so bad that it keeps me home for days. This has happened a few times since January, but now I know it is something I just have to deal with.

    It can be depressing. I used to read the Bible in church. But, I had to bow out of that responsibility due to the cough, after I had to leave the altar during a coughing fit and have someone else take over. I think the saddest day in the last few months was the day I went to meet the pastor and tell him I couldn’t do that anymore.

  • giraffe516
    2 years ago

    This hits home. I find myself becoming more of a hermit. Fatigue plays a part but s sometimes it’s just planning the logistics of my getting to a venue with limited mobility that hinders me and I cancel. Unfortunately friends become less and less understanding and stop asking.

    I even had my boyfriend of 11 years end our relationship because it is harder for me to do things and a lot of things are just not possible. I feel super guilty when I say yes and have to cancel so now I just say no. It’s easier.

  • Yoshitail9
    2 years ago

    giraffe516
    Sorry to hear that your 11 year relationship ended. In your case let’s look at that word “boyfriend”…….it appears that the “friend” was separated from the “boy” that he was.

  • lcal
    2 years ago

    It is nice to feel understood and not alone in this. I too am fortunate to have great family and life long friends who are understanding but I ? Do they really? I have slowly learned to not make plans because of the difficulty having to cancel. A great example of this is I am going away this weekend for a long weekend 1/2 with my husband and 1/2 with my friends. I feel so exhausted an fatigued today that the thought of packing anything is overwhelming. Sadly, even showering to be able to go adds to the anxiety of it. Time is running out as we leave in the morning(by car) and I guess I’m feeling uncertain what to do.
    Lisa

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