An outline or profile of a person who appears to be invisible.

What You Don’t See

“You don’t look sick” is a phrase that I think everyone fighting a battle with Multiple Sclerosis has heard at least once in their life.  Discussing how MS is an “invisible illness” is a common talking point among those who suffer from the disease.  

I don’t look sick but I am suffering

Many use a cane, walker, or wheelchair, however, just as many do not, leaving few, if any, recognizable symptoms for those with untrained eyes.  In a world where people seem to only believe what they see (at least when it comes to illnesses), our struggle is often minimized or overlooked. I’ll be the first to admit, I don’t look sick, not one bit, but that doesn’t mean I’m not suffering.  

If you could see it, would you understand my struggle?

I may look like you, but that doesn’t mean I am. I wish people could, for one day, see what they normally can’t. I wish they could see my struggles, just once. I wish just once they could glance below the facade I put up and see what they don’t often see.  Not for sympathy, but for understanding. Seeing what they don’t normally see might better explain some of my actions. Since they can’t, I thought I’d inform them of what they don’t see.

You don’t see

  • You don’t see me stumbling every few steps, as I try to lift my feet and walk, but my foot won’t do what my brain is telling it to do.
  • You don’t see that I keep my hand close to the wall as I walk to minimize a potential fall.
  • You don’t see that I’m often sitting or leaning against something, because standing can seem impossible at times.
  • You don’t see that despite whatever smile I put on my face, or any laugh that bellows from my mouth, that I’m holding back tears, because my legs are in burning pain, like they are on fire, from the inside out.
  • You don’t see that my legs are having uncontrollable spasms and that it’s all I can think about at that moment.
  • You don’t see that I’m having trouble following a conversation because there are too many other noises in the room and my brain is overwhelmed.
  • You don’t see how utterly exhausted I am.  So tired, so fatigued, that even lifting my hand seems like an impossible task.
  • You don’t see that I didn’t interject my thoughts into the conversation because I couldn’t get the words out.
  • You don’t see the planning it took for me to be here, as I obsessed about what the temperature would be like, if I’d be able to sit, and if there would be accessible bathrooms.
  • You don’t see how battered I feel.  How my bones feel like they’ve been pummeled by sledgehammers and how even my skin somehow hurts.
  • You don’t see how I struggled hard with almost cancelling because my body felt so bad.
  • You don’t see that my body feels like it’s fallen down a mountain and hit every rock on the way down.
  • You don’t see me reaching to feel my legs because they feel soaking wet, even though they’re bone dry.
  • You don’t see that my vision just went blurry and I can’t really see you, all because the temperature in the room went up a couple degrees
  • You don’t see that my body feels three times it’s actual age.
  • You don’t see what happens when I go home and pay the MS Tax, becoming confined to my couch for a few days, all for trying to act “normal”.
  • You don’t see the trouble sleeping I had the night before due to “painsomnia”, when my body was in too much pain to fall asleep.
  • You don’t see the problems I had getting dressed, first because I became confused and couldn’t figure out what kind of clothes I should wear and then because my hands were numb and I couldn’t work the buttons.  You also didn’t see how I had to have someone else tie my shoes for me.

What’s really going on

You don’t see any of these things, mostly because I don’t let you.  I put on a smile and a brave face and do my best to act normal, to act like I’ve always acted, because that’s all I want, to be normal, to be like I was.  I’m usually glad you don’t see these things, but every once and a while, I wish you could. I wish could see that just because someone looks fine, that you never know what’s really happening to them.  Always remember, anyone you come across may be fighting a battle against something you don’t see.

Thanks for reading!

Devin

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Comments

View Comments (42)
  • 11Little
    4 months ago

    Hey Devin
    You’re spot on. Not wanting sympathy but understanding our difficulties so we do not need to come up with excuses. Those familiar with me (mostly close friends and family) fully understand my physical limitations and adjust activities accordingly. Strangers sometimes wonder why I use handicapped parking when it looks as if I do not need it. Crossing traffic is not an option since speeding up is nearly impossible. Yes we want people to know the reasons our actions seem strange but they serve to keep us involved with people.

  • vonda_b
    4 months ago

    I’m printing this and making my kids and mother read it. Despite my diagnosis in 2008, they still don’t “get it”. This is a very accurate description. Thank you for always being able to “spell out” exactly what I’m thinking, Devin! 🙂

  • Devin Garlit moderator author
    4 months ago

    Thanks so much vonda_b! I hope that it is helpful and they take the time to read and think about it!

  • Lupe
    4 months ago

    Once again, you’ve hit the nail on the head. Thanks for sharing what most of us go through on a daily basis. Thinking of sharing this article on FB so my family and friends who do not understand or know or believe, can see what I go through.

  • Devin Garlit moderator author
    4 months ago

    Thank you Lupe! Appreciate it, I hope you share it and it is helpful.

  • ClumsyMumsy2
    4 months ago

    Devin, thank you so much! I sent this article to my Mum and work family. They have all been supportive but my guilt at “losing my grip on things” has burdened me with enormous guilt. You have put things into perspective. Now, I know it really isn’t my fault that I am not the parent, daughter, wife, and coworker I used to or want to be. All love to you.

  • Devin Garlit moderator author
    4 months ago

    Thanks so much ClumsyMumsy2! I very much understand the guilt, it’s a feeling I experience often. We both has to remember that we have no reason to feel guilty, neither of chose to be in this situation!

  • jangeo
    5 months ago

    Hi Devin, Let me first say Thankyou for this blog this is the only support system I have since get MS ten years ago I take care of myself pretty well so I definitely understand what ur saying it’s almost like nobody believes me that I’m sick so for me to click on this link and see other people going through what I’m going thru helps me get thru it sometimes I think boy if they can just walk in my shoes for one day I’m 40 yrs old I have a 15 yr old son that just started HS and he’s a Top Fball Athlete so u can understand he always has things going on and he gets upset cause I’m always late it takes me hours to get myself together and he always says things to upset me oh if it was somebody else u wouldn’t be late like what that’s so not true I’m late for everything my husband and there father was murdered last year I was even late for the funeral lol but how do I get him to understand this isn’t in my control I can only move as fast as my body allows me to as I’m type this now my one hand is numb I can go on all day but just know this blog helps me deal with this so much better thanks Jan

  • jangeo
    4 months ago

    Thanks for the support

  • ClumsyMumsy2
    4 months ago

    15 yo’s understand nothing. Don’t feel bad, I have had this since 2001. My daughter is also 15 and well aware of my diagnosis and information I give her and she STILL doesn’t “get it”. We have to wait only another 5-10 yrs. LOL. I so sorry for your loss, btw, I cannot even begin to imagine what you have gone through. I hope it helps that someone you don’t know is adding you to her prayer list. Love, Tam

  • jangeo
    4 months ago

    Thanks for the support

  • wandaholt
    5 months ago

    Hi Devin. So happy to read another article from you because you put the m.s. Journey into words for me with every writing. We have remarkably similar experiences and it feels good to know there is someone else like me.I feel,agree and understand everything you say. You write well so please keep it up and God bless.

  • Devin Garlit moderator author
    5 months ago

    Thanks so much wandaholt!

  • L Grah
    5 months ago

    Thank you for putting this into words.
    Lisa

  • Carol
    5 months ago

    Devin,

    As I was reading your list, it pretty much describes my life too and what I am going through. Thanks for spelling out what so many of us are enduring.

  • Devin Garlit moderator author
    5 months ago

    Thanks so much Carol, very much appreciate it.

  • gmc
    5 months ago

    Devin, I have to say I stole you list for fb, but I did give you credit. I guess we’re supposed to be glad we don’t look sick? Thank you so much for all of your clear descriptions.

  • Devin Garlit moderator author
    5 months ago

    Thanks gmc! Always happy to hear when something I’ve written has been shared!

  • Estelle
    5 months ago

    I have MS and reading this gives me some comfort that I am not abnormal with this horrible disease. I have trouble walking now but I still have my dog but cannot go the distance anymore. Going up and down my stairs is a real challenge. Hanging on for dear life when one lives in an older home and my Basement has no railings.

  • ClumsyMumsy2
    4 months ago

    Been there, Hon! Animals are the best comfort and they don’t mind if you cannot walk as far as you used to, the love you all the same. I consider it a badge of honour to be ‘abnormal” LOL

  • Devin Garlit moderator author
    5 months ago

    Thank you Estelle, be careful, falls are some of the worst problems for people like us!

  • gmc
    5 months ago

    It may be time to forego the basement or splurge on railings!

  • MonstrositySickness101
    5 months ago

    Good morning Devin,
    Thank you for sharing your descriptions of pain. I feel that I can’t describe to others what it feels like, exactly how bad it hurts. I guess they couldn’t know if they haven’t suffered from chronic pain like we have.
    I really didn’t know others experienced whole body aches and had bone pain like me. My body is tired and feels bruised.
    I think I’m going to do a new post myself about my MS. Just get it out there!!

  • Devin Garlit moderator author
    5 months ago

    Thanks so much MonstrositySickness101, pain is a much more common symptom than most people realize, sorry to here you experience it as well. I talk even more about pain here: https://multiplesclerosis.net/living-with-ms/the-torture-that-is-chronic-pain/

  • Grant1270
    5 months ago

    Great article. I was amazed at how many items I was checking off the list. I need to show this to a coworker of mine. He gets to work when I do and always asks how I’m doing. My usual response is “I feel like I’m walking chest deep through thick mud”. Not a lot of people at my work know I have MS, only the important ones, i.e. my boss. The symptom that shocked me was not being able to concentrate in loud rooms because of all the noise. I was diagnosed 4 years ago (body’s 50th birthday present to me) but I’m discovering that I’ve had issues long before my diagnosis. Thanks for the article.

  • Devin Garlit moderator author
    5 months ago

    Thank you Grant1270, I hope your coworker reads it. I feel that’s often the best way at explaining ourselves, by sharing something like this. Louds rooms are a pretty big problem for me too: https://multiplesclerosis.net/living-with-ms/my-sensory-overload-experience/

  • mcknighm
    5 months ago

    Thank you so much for this article. You nailed exactly how I’m feeling. Wow.

  • aparks
    5 months ago

    My son was recently diagnosed with MS. During my extensive research, I read about, then purchased this book and found it extremely helpful. My prayer is that it helps you too.

    ‘Multiple Sclerosis and (lots of) Vitamin D’. by Ana Claudia Domene

  • New to me
    5 months ago

    Great read and spot on! I get the most dirty looks and grief from using the handicap parking spots! Even had a “friend” say “you should be assumed of yourself” of course they had Idea was parking to go into the pharmacy to pickup my monthly meds, that due to muscle spasms my fingers were so contorted the pharmacy tech had to fudge my signature for my insurance etc. that once home I needed help up the stairs no to them I looked fine/normal and I was just being lazy… Hold your head high and forge ahead..

  • Devin Garlit moderator author
    5 months ago

    Thank you “New to me”, using my placard is always such a difficult thing for me, even though I know I need it. It’s often not even strangers that are worst of it too.

  • potter
    5 months ago

    You checked everything off my list, I wish everyone could just feel the way we do for one day. Potter

  • Devin Garlit moderator author
    5 months ago

    Thank you potter, I wish that a lot too. I hope that this article will at least make it’s way in front of some people who don’t have MS, in order to help them understand it a bit more.

  • ripster
    5 months ago

    Devin,
    That paints a perfect portrait of what we go through on a daily basis…
    Some days good and some days very bad.
    It’s just hard to talk about with someone that don’t have this disease…. my wife always says what’s wrong with you the last couple days…and it’s the mood swings I have…it’s just moot at this point…as a ms battler of 20 years I just keep most of my symptoms hidden because I don’t want pity so I just don’t say anything.
    And your perfectly on point… I find myself not adding to conversations much because I can’t keep up.
    Keep fighting
    Eddie

  • Devin Garlit moderator author
    5 months ago

    Thanks so much ripster, appreciate the kind words!

  • Mike H
    5 months ago

    Damn, dude. You hit the nail on the head again. With this one & with all your writings. I suffer from all your same symptoms brother… I’ve mentioned this to you in the past when we touched base son’s time ago. As you know, you are not alone….Mike

  • Devin Garlit moderator author
    5 months ago

    Thank you Mike!

  • Mike Russell
    5 months ago

    Devin

    Having MS I totally understand every word. Well stated my friend

    Be safe and keep smiling it’s a life changer!

  • Devin Garlit moderator author
    5 months ago

    Thank you Mike! Also, I agree, smiling can definitely a life changer!

  • collena
    5 months ago

    I wish I had a traffic light on my chest so my loved ones could see my mood swings coming.

  • Carol
    5 months ago

    collena – I loved your comment. I wish I had a traffic light on my chest too

  • Erin Rush moderator
    5 months ago

    That is a fabulous idea, collena! If only such a thing were possible! Best, Erin, MultipleSclerosis.net Team Member.

  • Cardgal18
    5 months ago

    You could not have said it better Devin!

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