Skip to Accessibility Tools Skip to Content Skip to Footer
A seemingly empty chair with a face mask floating above it as if an invisible person is sitting there.

The Mask

Lately, I haven’t felt the greatest. My fatigue is more prominent, I’m having severe joint pain that makes it difficult to walk, and it’s making it hard to get things done. All of these things make me feel lazy and useless, even when I know I’m not. I know it’s just my MS giving me a run for my money. Yet, whenever someone sees me, they tell me how good I look. Most in the MS community know that as someone with an invisible illness, that is one of the most frustrating comments you can get. People mean well, but they have no idea the mask we’ve put on just to look so “great”.

Putting on a brave face

The other day I was walking (more like waddling in pain) with my mom, and as we approached, the door people I hadn’t seen in a while commented on how good I looked. Don’t get me wrong, it always feels nice to get compliments, but little did these people know how exhausting it had been to get up and get ready that morning. Little did they know that before I got to the door to go inside, I told my mom that I had to put on my brave face and pretend like it didn’t hurt to walk. I’m not even sure why I told her that; I just knew that I’m so used to others thinking that I look fine that I didn’t know how they would react seeing me on a particularly bad day.

People don’t see the effort needed to look okay

People don’t see what it took to get ready that day. They don’t see how hard it was to put on that full face of makeup and how I had to sit on the bed just to put on my shorts. They don’t realize that behind the mask of looking good comes so much effort and many choice words. Remarks about how we look can be difficult. On the one hand, you feel great to know people think you look good, but on the other hand, it’s hard to swallow when you know how you look on the outside and how you feel on the inside don’t match.

Looks can be misleading

I am thankful that I can go out without people realizing I’m having a typically bad day physically, but I hate the feeling that my looks may be misleading. I want people to know that despite this illness, I have a lot of good days, but I also don’t want to lie about the fact that I have bad days, too. We all do. It’s hard to know how to look fine on the outside but also let people know that realistically, I’m not always fine. There are many days when I am struggling and in pain, but most days doing what I love and being out and about with my loved ones trumps all. It’s not like we intentionally hide how we feel either; it’s just sometimes easier to keep pretending than to take the time and let others in on whatever it is you’re facing that day.

Encouraging others with invisible illnesses

We don’t have to hide around others with invisible illness though. It is a community of people who know exactly what that feels like. Invisible illness is so misunderstood and not talked about nearly enough. I know there are many others out there who know what it’s like to feel like they are wearing a mask, too. That is why it is important that as a community, we continue to advocate, educate, but mostly encourage one another. Genuine, heartfelt encouragement is a gift. It’s not just a gift we receive, but it’s the gift that we can give to each other. It sounds cheesy, but it truly is the gift that keeps giving when it’s done in a genuine manner. This is something we can all do. We all wear our masks. It may not be MS, it may be something entirely different. But, I do know we all put on a brave face from time to time. So, let’s be there for each other. It’s difficult enough being told you look great when you feel like you’re dying inside. Be there for someone today, and know you’re not alone.

XOXO,

Calie

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

  • patti
    18 hours ago

    Calie, thank you, this article nails how I feel when fatigue hits me and it’s the best description I’ve read so far.

  • Ms fortunate
    3 days ago

    Thank you Caile
    What a relatable article. I couldn’t agree with you more. Support from those that understand is invaluable as is education for those who don’t.
    May your mask days be few and far between
    ❤ ms fortunate

  • Doobek
    3 days ago

    Calie, I hear what you are saying and I’ve reacted and done all those things for many years. I was diagnosed in July of 1990 while in nursing school. For many years other ppl didn’t know I had any disease. There were no outward signs present. I knew I had MS and suffered from the unpredictable, ever changing intruder! One with MS never knows what the ever raging disease may do to them! So, yes I wore many masks! We all do! Whether one has MS or is without any chronic disease process, everyone wears masks. That’s bcuz very few are comfortable with who they perceive they are! Only when one starts to see oneself as Jesus does. He created us to need a Saviour. We must surrender our will to His. Only then will we start to find innER peace and fulfillment! It’s beyond inner peace and joy when we make that decision!

  • Lupe
    3 days ago

    Callie, first I would like to congratulate you on the wonderful news you shared a bit ago. I haven’t been on here in a while, so this is a case of better late than never.

    Second, you hit the nail on the head with your article. I know people mean well but I can’t help but wonder what they think when they see us looking great even though we’re sick and are dying on the inside. I’ve learned to shrug things off and say oh well. It is what it is. Nothing’s going to change it. I have to accept it and move along. And if they don’t agree, then they’re not worthy of my time. Life is too short.

    Hope you’re feeling better. Thanks for sharing your thoughts.

  • PS98107
    3 days ago

    Dear Calie,

    As you say; it doesn’t matter what people are actually thinking after they tell you “you look good”! That said, I’m kind of an oddball. Yes, I was diagnosed with MS by three different Neurologists and I have never taken meds of any kind for it in almost 17 years. I’m an oddball in that as far as I am concerned, If I don’t feel sick/nauseated, tired, extremely numb, or have the sense of muscular weakness like I had initially, then I don’t consider myself sick. I still wonder how much of MS symptoms, like fatigue, pain, lack of coordination and cognitive issues, etc, are the result of one’s body trying to process the medications, side effects of those meds and how much of the meds actually hinder our body’s natural and dynamic ability to heal itself?

  • Yoshitail9
    4 days ago

    Calie
    You are right on the mark. I am somewhat curious though, that when the folks tell us how good we look, when they walk away, what are they really saying or thinking. Not that it really matters because we know how we feel, but just curious. Thank GOD I’m not a cat !

  • BethSlusher
    4 days ago

    This is all so true. Sometimes even my own family, with good intentions, say I look good. It really can be so tiring to get up off the couch, get showered, dress and put on some makeup. By the time I get all of this done I’m ready for a nap. Some days I can do quite a bit and then for the next few days I’m wiped out. Thanks for the article that reminds me that I’m really not alone.

  • Shelby Comito moderator
    4 days ago

    This community understands that too well – you are definitely NOT alone. We’re here for you! – Shelby, MultipleSclerosis.net Team Member

  • ladyfarial
    4 days ago

    Dear Callie,

    You nailed it. Recently I started to have a huge amount of pain in my right leg. After that started I’ve had an episode of spastic muscles in that same leg.it has been horrible to walk. People tell me how good I look all the which makes the depression worse.

  • Toddlius
    4 days ago

    You hit the nail on the head. I am not feeling well either. My back is hurting, my legs are weak. I am not going to put on make-up though. lol. Just staying home and wall walking. If we go out, I’ll use a walker.

  • doctp12
    4 days ago

    So very True,
    I’m a physician and ran into a Neuro surgeon that I haven’t seen in a while.
    He said, Tom, did you semi retire?
    I told him the entire story and he responded, you look really great, like you have no health problems at all… lol.
    He and I have been in medicine for almost 4o years, yet, the comments are the same.
    If you don’t experience it, you really can’t relate, even if you are a physician having seen the worst of the worst.
    So, I just smile and say, Yep, I feel great and still love my work, just wish that I could work more!
    So just smile and say,”Yes, I feel great” it helps.
    Tom

  • Shelby Comito moderator
    4 days ago

    It’s amazing how this misunderstanding can happen even among health care professionals! It really speaks to the difference between knowing about something versus actually experiencing it yourself. And it demonstrates just how hard it is for others to truly comprehend the intricacies and depth of living with MS. I really appreciate you taking the time to share this encounter with others here, @doctp12. Thank you so much! – Shelby, MultipleSclerosis.net Team Member

  • Poll