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Don

Don’t Apologize For Having Fun

For most people, despite appearances, living with Multiple Sclerosis isn’t easy.  We’re plagued by severe fatigue, pain, spasms, and a bunch of other invisible symptoms. Life with MS is also wildly unpredictable, so we never know when these symptoms will pop up suddenly and cause us to cancel plans.  In short, living with MS is like riding an unpleasant roller coaster with a lot of high points and low points.  Because of the deceptive nature of the disease, it’s easy to be (or at least feel) judged much of the time when we are at one of those high points, when we are able to at least appear “normal” and have fun.  With all that judgment, whether real or imagined, it’s easy to feel guilty for occasionally having a good time.  I’m here to say that you need to move past that and to tell everyone that you don’t need to apologize for having fun sometimes.  You’ve earned it!

Appearances are deceptive

I’ve talked often about the invisible symptoms of MS.  Although it sounds crazy, many times, those symptoms not being visible to others can be the hardest thing for us to deal with.  “But you look so good” is a phrase that I’m sure everyone with MS has heard at least once.  That sentiment from others is made even worse when they do see you out and about or otherwise doing things that they think someone with a chronic illness shouldn’t be able to do. What people don’t understand though, is that no matter how we look, we’re probably still suffering inside.  People may see me meet up with friends at a bar and think, oh, he’s fine, look at him.  They can’t possibly see or know that, yea, I made it out, but my legs are in searing pain and I’m fighting back tears from it.  They don’t know that trying to hold a glass is difficult because my hand has is weak and has tremors.  They also don’t realize the adventure that every sip of that drink is, because half of my face and lips are completely numb.

Making the most of what we have, when we have it

If there is one thing MS has taught me, it’s to enjoy and cherish the good moments.  I’m at a point in the disease where I do feel uncomfortable a lot, I have daily issues, and none of that is likely to improve.  When you feel crappy all the time, you absolutely have to make the most of those times when you don’t feel as bad as you normally do.  If my symptoms are bearable, you better believe I take advantage of it, because I know that may change at any minute.  The reality of MS and many other chronic illnesses is that not every moment is the same.  Like I said, we ride an unpredictable roller coaster every single day, we have to enjoy those highs whenever they might pop up because we never know when (or if) the next one will be. Please remember that if you see someone with a chronic illness out, they do so knowing they’ll probably end up paying for it later.

Haters gonna hate

Having a chronic and often invisible illness like MS can really highlight how judgmental people can be to others, even strangers.  Many of us have had ridiculous experiences with people who attack us for using our handicap placard. I’m sure we’ve all been judged by people and we don’t even realize it. For some people, if they know we are disabled or have a chronic illness, even smiling in a picture on social media will be enough for them to think or even say something awful about how we’re actually fine and we’re faking it. There are always going to be those people out there.  I always say that we need to educate them, but in reality, there are still going to be people who are just miserable and have to find a reason to dislike others. They have to judge them in order to feel better about themselves.  There are a lot of great people in the world, but unfortunately, there are some bad ones too. There isn’t much you can do about that. You do have to try to not let it get to you though. You can try to educate them, but remember, their comments and thoughts are more about them than you. You can’t waste time and those precious good moments on them.

No apologies needed

It would be great if everyone in the world could understand and accept that there are diseases that are invisible. Even if you don’t have a chronic illness like MS, you might still have some demons you’re fighting. I’d love if everyone could read this and suddenly “get it”, but they won’t. We live in a world where we are constantly fighting an uphill battle against appearances and stereotypes. At the end of the day, you are what matters, and you must remember that no matter what your condition, no matter what evil you are fighting, you don’t have to apologize to anyone for enjoying some moments of your life.

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

  • Mascha
    1 year ago

    Again a brilliant read!!! I have stopped contact with my family due to then believing i am lying about my disease. And yes on good days i go for it full on,but always suffer the next day 🙁
    Fantastic read.
    One of your other articles about fatigue i showed my husband because he didn’t get it,when i tried to explain. Your article he understood:)

  • Devin Garlit moderator author
    1 year ago

    Thanks so much Mascha! Really appreciate the kind words!!!

  • aprilk27
    2 years ago

    Hi Devin,
    I really look forward to your articles and usually end up passing them along to my family in hopes it validates what some of my MS issues. I was diagnosed almost 2 years ago at 38 and what had started out as mild numbness and fatigue have turned into misery most days. I went from working 60 hrs++ a week helping my husband run our new business and taking care of our very active 6 yr old daughter to working from home (barely) and now needing my Mother to retire to help with my daughter. I used to be very into lifting and running and now if I make it out of the house once a day it’s a big event!

    This post really hit home for me and how I’ve been feeling lately with having to try to prove to judgmental people and even those who are unfortunately along on this journey with me, my husband and mother, what I’m feeling. its frustrating on both sides because they can sometimes take my lack of participation in things I used to enjoy with them personally and that my loss of motivation or drive is just pure laziness which hurts worse than the actual physical pain! I hate always disappointing them. I’ve always had a tendency to be a loner and this disease has made me now more of a hermit than ever! It’s starting to change my personality and cause much depression and anxiety. I can handle the physical pain much better than all this inner turmoil! But back to your post- I find myself playing down my happiness on good days because I feel it just makes my bad days harder to understand or “believe”. Others don’t see that it takes all day to get myself all put together and rest just to look like I used to when I would go out before…and what those couple of glasses of wine and staying out late will do to me the next day. It’s funny that the one who is most understanding even though she is affected the most by my decline is my six year old daughter. She (and my 3 little dogs always by my side) always give me the strength to keep going. Thanks again for all of your posts and the comments of others… really helps to not feel so alone!

    Staying positive,
    April

  • Devin Garlit moderator author
    2 years ago

    Thanks so much for commenting April, I really appreciate it! I obviously understand everything you said! I hope you’re having a good week! You most certainly aren’t alone in all this, never forget that!

  • BaltoRic
    2 years ago

    Hi! I sometimes council people who are living with MS. I know that people sometimes struggle with these issues exactly, as do I. When someone tells me “you look so good” right after I say that my MS has been giving me problems, I reply (knowing that whatever I say will not be really understood) in a joking way that “I know I look good. At least I don’t look like the absolute crap that I feel. If I did, would’t that be sad. But don’t let the appearances fool you – I still feel pretty bad.” That usually puts an end to the comments of how good I look living with MS.

  • aross
    2 years ago

    I feel so reassured by your honest & often humorous posts Devin, thank you. It seems like whatever is on my mind regarding my husbands RRMS that he’s had for 20+ years you write about spot on. Thank you!

  • Devin Garlit moderator author
    2 years ago

    Thanks so much aross!

  • lcal
    2 years ago

    Hi Devin and thank you once again for articulating what I believe we all go through as another silent MS issue. For me, after 30 years of MS and feeling the shame and guilt of the need to explain when I finally have an hour of fun after months of being in the walls of my house has finally started to go away. I attribute it mostly to age. As we all know with age comes the ability to feel comfortable in our own bodies/minds no explanation needed!!! The second reason is sheer tiredness and not having enough energy to care what others may think Either way it’s a liberating feeling and I hope your article bringss insight to many to STOP APOLOGIZING for whatever illness, demons, etc and

  • esly
    2 years ago

    Love it!!!!❤️

  • corgi9
    2 years ago

    Devin
    Let me begin by saying that I am a religious guy so without being unholy I would refer to your column as the Gospel of Living with MS according to Devin G

  • Devin Garlit moderator author
    2 years ago

    Thank you corgi9! LOL, I like the sound of that!

  • joebic01
    2 years ago

    Devin,

    Loved the article. Over the last month I’ve been bullied for owning a motorhome, taking a camping trip, and even working on it when I have a “GOOD” day. From keyboard warriors to my neighbors, I get the “YOU’RE NOT SICK” treatment almost daily and I’m tired of it so much that I’m considering moving. It is truly sad when people don’t even care to understand and are so judgmental. I would like your permission to use the article as needed to shut some of these folks up instead of always trying to explain myself.
    Again, thanks for opening my eyes.

    Joe B

  • Devin Garlit moderator author
    2 years ago

    Thanks Joe, absolutely use the article! I hope people will use anything I write to help explain to others what it’s like. Sorry to hear of your situation, sadly, many of us encounter it. People just don’t understand that we can still have good moments, but we can also have a good moment be interrupted by a bad one at a moments notice. Our lives are so unpredictable! Good luck, I hope they will be more understanding.

  • Johan
    2 years ago

    I wouldn’t call living with MS easy, more like a pain in the ass, for me anyway. I like the saying that MS is a snowflake disease, no 2 cases are alike. And for me, my MS is pretty goddamn predictable. I apologize for the blasphemy, not that I necessarily believe in that kind of thing, but apologies none the less. I will do better.
    Since diagnoses in April of 2012 it seems my physical ability to do many things has decreased. From head to toe. Thinking, speaking, walking, typing, all of these and much more seem to be progressing in a downward spiral to MS disability. The progression is relatively quick if you ask me; I started walking with a cane not too long after diagnoses because balance and walking became an issue. I quit working in November of 2014 because I could no longer do my job. Or any job for that matter. My MS does seem to be pretty predictable, however. Every day I wake up with the same worsening ability as before.
    Yesterday, I traveled over 150 miles for an MRI; a friend of mine drove as I would never dream of traversing that terrain in my present condition. If you know what I mean. Hopefully you do. I stopped drinking fluids around noon the day before thinking it would make traveling better which it did. However, in preparing for and enduring the trip I neglected many of the things I would normally do to treat my MS. Like drinking lots of water and lying down every few hours in an attempt to regenerate.
    As a result of my adventure, I received a new MRI reading and crapped myself out for about 15 hours. Today I have already drunk much water and used the restroom comfortably in my sweats numerous times. As predicted, my MS seems to be having its way with me as I do what I do to exist. But my friends are texting me, dinner plans are in the works and you, Mr. Garlit, have afforded me an opportunity for which I am grateful, thank you. Live long, and prosper.

    JE

  • Devin Garlit moderator author
    2 years ago

    Thank you Johan! I hope you are having a good day. I very much have trouble traveling, that long of a car ride really does a number on me. I almost never travel too far now because of it. I wrote a little about it a while back here: https://multiplesclerosis.net/living-with-ms/my-trouble-with-travel/

  • tfs
    2 years ago

    Devin: I read everything you write with great anticipation. I agree so totally. I even buy into it myself and let shame kick in when I am not cooking and cleaning and being generally fabulous. LOL

  • Devin Garlit moderator author
    2 years ago

    Thanks so much tfs!

  • Laura Kolaczkowski
    2 years ago

    I love this, Devin. You’ve hit on a key point that we do have good days or even just good hours and can enjoy ourselves. Thanks for saying it out loud…. -Laura

  • Devin Garlit moderator author
    2 years ago

    Thank you Laura!!!

  • Nancy W
    2 years ago

    Thanks for this. I have been feeling crappy a lot in the last 2 weeks. People keep saying, “But you have done so well.’ Yep. But this week I am not so well. I am in the car on the way to a camping vacation. I am praying the beautiful scenery will help me forget my fatigue and my swallowing issue that is causing a chronic cough.

  • joebic01
    2 years ago

    Nancy,

    I can tell you first hand that when we go camping we just take it as easy as possible and what a difference it makes. We actually “glamp” in the motorhome with the AC on as I really need it. The beauty, the birds singing, and wildlife really help me and I hope it helps you as well. Enjoy your trip and all it has to offer within your limits.

  • Devin Garlit moderator author
    2 years ago

    Thank you Nancy! I hope the scenery and change of pace will help!

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