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You Don’t Look Sick

You Don’t Look Sick

When MS is in the news, those actually living with the condition have a new spotlight on them, but if they “don’t look sick” they face additional questions from friends and family.

You Don't Look Sick Comic 1


You Don't Look Sick Comic 2


You Don't Look Sick Comic 3


You Don't Look Sick Comic 4


You Don't Look Sick Comic 5


You Don't Look Sick Comic 6


You Don't Look Sick Comic 7


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

  • JaneStaunton
    1 week ago

    And you don’t look look like an ignorant woman…
    Hehe, can I use that?

  • CornishJon
    2 weeks ago

    Even had it by a nurse in hospital , WTF really when I was in for treatment for my MS

  • MeWithMS
    1 month ago

    If I heard the comment at my Dr office “you are looking good today” I’d ask them if they have a special “MRI” window where they can see what is happening inside my brain and spine. What matters is how that looks. Thankfully at my last workplace they had a big push on the “invisible illnesses” that will likely catch on, or is already going on, across the country. The company is typically a follower in these fads so there should be more understanding that the outside appearance of a person can be a total cover-up of what is happening inside and the struggle within.

  • Therry Neilsen moderator
    1 month ago

    Reminds me of the time I told somebody I had MS, and she said “But it doesn’t show!” and I said, “It does to me.”

  • Bruce5917
    2 months ago

    Thank you it is so bothersome when someone tell you that you don’t look sick

  • lightweaver
    3 months ago

    Thank you!

  • markt
    3 months ago

    You cant see fatigue (this is not being tired look at it like, the worst hangover ever and being hit and run-over by a large truck while carrying a 80 lb backpack running a marathon thru Concreat up hill all the way that times 2)
    You cant see a headache or what is more like the pain of an ice pick shoved in just behind the eye
    You cant see the lack of vision blurry double or blacked out sections
    You cant see dizzy
    You cant see vertigo
    You cant see buzzing burning numb or weak extremities or all of the above
    You cant see thoughts jumbled or words that are stuck in you mind and will not come out
    You cant see confusion
    You cant see the feelings of what ever is going on inside
    You cant see foot drop (unless your right there when it happens)
    You cant see off balance or using a light touch on a wall or furniture as to not fall down
    You cant see what was forgotten when entering a room or from a loud noise or distraction
    You cant see the frustration of not being able to do your most favorite things anymore
    You cant see just how badly the need to go to the bathroom happens
    You cant see how many time this happens (well I guess you can if your in the right place)
    You cant see the cramping
    You cant see having no idea what I just said or want to or was just going to say
    You cant see how bad the day after almost anything is
    You cant see the depression of not being able to be with your loved ones (as one of the above has you just laying down)

    You cant see the effort it takes to make it all something You cant see

  • JaneStaunton
    1 week ago

    Love your description of fatigue

  • Legsonstrike
    4 months ago

    We all deal with this on a daily basis, I feel mine is declining rapidly but I don’t want to complain!! I am glad I can still visit with my grandchildren and hold them close to my heart!!

  • metz
    4 months ago

    I still don’t know how or when to tell people about my hidden friend. Sometimes I take the leap and try to share my diagnosis but the results have been mixed. I have no physically visible symptoms other than terrible balance that I can cover up pretty well. Basically I come of as a pissed off white guy who doesn’t like people. It makes new friendships difficult to cultivate. It probably doesn’t help that I can’t f’ing see for shit so I can make a new friend and look right at them the next day and Ignore them or act like I don’t know them. Without any intention I constantly give people strange or long stares just trying to put the picture together. It’s brutal socially, just add crushing depression and introverted to top it off. I shared with a neighbor once that I had ms and she said her sister in law had it and that she never does anything and kind of an eye roll. Great! So that’s how they feel about me. It left me wondering what I already knew, that’s how people feel about me.

  • m.Todd
    4 months ago

    It still pisses me off when I tell someone something about MS wreaking havoc on my balance and they respond with “yeah, my balance hasn’t been quite right since I climbed down that ladder a couple of hours ago”. I guess that’s the same as having MS, right? !!!

  • m.Todd
    4 months ago

    I did print the “I’m sick…Sorry it’s not visible” and taped it to my office door.

  • J4M35C0ULT
    3 weeks ago

    I am going to put a similar sticker on my forehead!

  • SharonW27
    5 months ago

    For some of my co-workers, I want to yell: I have MS EVERY day! No, I don’t look sick most of the time. And you have no idea how many times I’ve toughed it out to work productively for 8 hours.

    What makes these comics so funny is that their SO true!

  • djohns531
    5 months ago

    I have been looking for a “medic alert” necklace for MS, for some time now. I did find the same one (very nice) one silver, and one gold. My question is….HOW DO I FIND ONE FOR UNER $100~& ^$WAY BEYOND>>>isTHAT a KINDA CRAZY PRICE, or is it just me?? I have a handicap placard for if I am feeling REALLY bad, but sometimes feel the exercise will be nice. Last winter, an elderly gentleman (a KIND description at most) said to me “THERE IS NOTHING WRONG WITH YOU, YOU LOOK FINE!! AND wanted to know “WHO DO YOU THINK YOU ARE USING A HANDICAP ACCESSIBLE PARKING SPOT!!”, I did not owe him and explanation, but politely explained that “I have MS and sometimes I just can not walk far, especially in 6 inches of snow!!” He continued with his rant, I finally brought my “tone” on level below his and said “Sir, you wait here, I will go home and provide you with the MRI scans, my neurologists report and the MyChart communication with my PLETHORA OF Dr.’s!!!” I, OF COURSE WOULD NEVER give anyone my medical record or history, but he did walk away quite embarrassed!!

  • TerryJ
    4 months ago

    djohns531. I saw your comment regarding a medic alert necklace. Please check Amazon. I found a medical alert ID necklace for men and women. Stainless steel dog tag with free Engraving.
    I do hope this helps in your quest.

  • Paul1951
    5 months ago

    I have had relapses off and on solid the last 5 years. This past July I finished my last Lematrada treatment, I have taken the Betaseron And the tecalfedria treatment.K can assure you that the heat really effects me. I recently obtained one of the polar cooling vests which helps some. I even stay hot all winter. I get the you don’t look sick or you are looking good all the time. This to a man who can stay up only about 3 hours a day. This is really a disheartening disease. I pray others do not have to go through what I have to bear

  • Wahuberfeb22
    6 months ago

    LOLOLS !! Brooke ! I love this ! Every time I look at it i want to tell you how it makes me laugh . Which I need to do. Especially when it comes to this issue lately. Thing is I’ve been pretty sick, and I go out in my wheelchair which I need more now and there’s comments , ” what are you using the chair for ? ” ” you don’t look sick ” I don’t know what a person in a wheelchair is supposed to look like. Even after PT , and regular exercise I need it due to weakness , and balance . It was ordered by the rehab I was in when I couldn’t walk well after a flare up. I’m SPMS , diagnosed over 22yrs ago. So, I need it whether I look like it or not LOL
    Well done piece ! I think I’ll order the suit hahahaha.

  • Sapphire
    2 months ago

    My own hubby will say ask me why I’m using my cane. I just look at him like he’s lost his mind, and say, “because someone needs a beating today…”

  • Shelby Comito moderator
    6 months ago

    So glad Brooke’s comic resonated so well with you @wahuberfeb22! Well, “glad” isn’t the right word, but I agree – Brooke so perfectly captures how frustrating it is to live with an invisible illness and it’s helpful to be able to just laugh about it sometimes. We’re actually doing something very special with this comic for World MS Day tomorrow, so make sure to check your email or check back on our site tomorrow – I think you’ll love it! Thanks so much for taking the time to comment! – Shelby, MultipleSclerosis.net Team Member

  • Skydivertc
    6 months ago

    The comic strip was priceless.I’m 43, having used a cake for 10 years and hearing ” you don’t look sick” for the past 20 yrs, and I still get upset sometimes to the point where I will say something directly.. a good attitude and ignoring their looks and comments,Im still a work in progress…

  • Kitsy
    7 months ago

    I believe the reason I have lost friends and one of my sisters is because I don’t look sick. Not only do I look normal, I am also a very strong extrovert so when I see people I react in as a happy person. When I am smiling and say the fatigue is my worst symptom of MS, it is hard for others to understand. My sister Sally deliberately sped up her walking leaving me trailing behind because she thought I was faking being sick. After a couple of years, she decided she’d no longer reinforce my attention-getting behavior. She no longer speaks to me at all. This was heart-breaking because we had been very close the previous 50 years. Thankfully I have another sister and two brothers who believe I have MS. They understand that I can be happy to see them but be too tired to do everything I used to.
    Some of the friends I lost have similar reactions to my sister Sally. Others know someone else with MS and since my symptoms are not the same or as severe they don’t believe I have MS. They think I left my job because I am lazy despite years of working very hard and making major advances in my career. Again I am grateful that I have made new friends who accept me as I am today. I have become closer to older people in the neighborhood, those in a pool therapy class and art classes.
    It’s hard for me to accept my illness and it feels mean-spirited when others reject me. I’ve learned to let go of my former activities and replace them with new ones that are at my pace. I have also finally accepted the loss of people and find new ones – some who were right here in my neighborhood. I’ve also come to realize that I cannot keep pace with the much larger social circle I used to have, so it’s okay to have fewer people in my life.

  • Aramorris
    4 months ago

    God bless you

  • pippa
    6 months ago

    Yes, it’s true. Unless you are in a wheelchair you are ….um “faking”it.
    The lack of understanding in just every direction, is very hard to take.

  • chong61
    6 months ago

    Pippa,
    The actively resting came in an article by Devin. It is titled…..

    “you are not lazy, you are actively resting.”

  • Wahuberfeb22
    6 months ago

    Hi , I’m wendy . I just saw your reply after I posted one this morning. I’m up too early and can’t sleep . I want you to know that you aren’t alone . As I was reading, I thought I could’ve written your response myself . I’ve lost family members, in- laws, friends , all for the same reasons . They think I look good and can’t really be sick. I just take care of myself. This monster is still ravaging my brain . Grrrr. It’s sad and frustrating , i understand. Losing people is hard . Especially when you have always worked hard and don’t want negative attention. You are doing great that you’ve kept your positive attitude, and moved on , making adjustments to your social circle. It’s an illness that constantly keeps us in a state of adjustment. I noticed in the one article, the young man suggested living for today. I like that vs getting caught up in too much future talk jargon about what they may or may not discover one day .
    Live for today . That’s what we have for sure . As for those judging us ? We continue to be examples for them. Hang in there!

  • jn99
    7 months ago

    LOVE the cartoon! Thank you.

  • Lily
    7 months ago

    Brooke,
    I like your cartoons. I read someone else post about wearing a sign that says “I’m sorry I just tripped and fell into you, I have MS.”
    Whenever someone says to me “you look good”, I will always say “thank you! You look good too.” There is always silence. I’m not sure if the person is processing what just happened, or truly understanding what just happened.
    Anytime someone compliments me, I will accept it.
    I stopped explaining soon after I was diagnosed.
    There seems to be a large percentage of the population that doesn’t understand. I would hope my friends and family would accept me no matter what.
    I mean, if you were to say “I’m feeling like I’m coming down with something”, whether it was a cold or you felt nauseous, they would understand. They would want you to stay home, and not get anywhere near them.
    So just say something like that, and see if they’re more understanding.

  • Brooke Pelczynski author
    7 months ago

    Thank you so much Lily! Working very hard on getting people to understand! haha

  • Lily
    7 months ago

    Hi Brooke,
    I found a great video titled “You see, I See: Helping Kids Learn About MS.”
    As you know, explaining to others how we feel, isn’t usually met with understanding. This video is exceptional, in the way it shows how we feel.
    The video shows his mom, who ‘looks great’, but when the boy puts on his special glasses, he can see how she really feels.
    It’s connected to MS LifeLines.I think you can find it on YouTube.

  • Shelby Comito moderator
    7 months ago

    Hi @Lily, I love this approach! Thanks so much for taking the time to share. We’re grateful to have your voice in our community. Best, Shelby, MultipleSclerosis.net Team Member

  • Lily
    7 months ago

    Hi Shelby,
    Were you able to see my reply to Brooke?

    The video “You See, I See: Helping Kids Learn About MS” is a great visual to share with people who don’t understand.

    I shared it with my brother, who is a doctor, who couldn’t understand, why I looked so good, but couldn’t “push myself” thru the day.

    We can share this video, but as I always say “I can explain it to you but I can’t understand it for you.” :-p

    It’s another way to explain it, and sometimes a visual can help.

  • Shelby Comito moderator
    7 months ago

    Hi @Lily! I just watched it 🙂 It’s not only so cute but really helps shed light onto daily life with MS in such a clear, easy to understand way. I agree – visuals can really help! Thanks so much for finding and sharing it with the community! – Shelby, MultipleSclerosis.net Team Member

  • Lily
    7 months ago

    Shelby, you’re welcome. I’m glad to hear that my comments are appreciated.
    I always wonder if my comments are read and by whom.
    I wish we could see the activity, like on FB private groups, we can see how many have “viewed” a posting.
    Thanks for being you!

  • Shelby Comito moderator
    7 months ago

    I hear you, @Lily! We appreciate your feedback and I’ll definitely make sure to pass along your comment to our design and tech team. Grateful to have your voice here! – Shelby, MultipleSclerosis.net Team Member

  • sucorone
    8 months ago

    When I’m struggling, I’m struggling. I don’t hide it but I don’t make a big deal about it. Fortunately, I am blessed with family & friends that have love, eyes & empathy. They do not judge, step in to help & we move forward together. I am so blessed because of them.

  • Karen K
    8 months ago

    Hi all. Everyone’s comments are all too familiar to me. Just fell and broke my humerus. So now can’t walk or use my arm. Not complaining. However family and friends don’t understand why it is hard for me to even leave my house. Getting in a car is nearly impossible and painful to boot. The arm should heal but MS symptoms progress nicely Lol. Rarely vent but it did feel good. Thanks for listening. Sending prayers and blessings to you all. Sleep well.

  • sandra5cents
    8 months ago

    I felt so hurt at a pre-Christmas gathering when I let the host know, I may not attend due to weakness and my new diagnosis. I pushed and went, so I could have a little opportunity to see my son and daughter in law. Imagine being told my the host as I arrived “well, from the sounds of it you sounded half dead, you look pretty good” I was hurt and stunned. Did he think I was faking? It was an insinuation of this to me.

  • Guitar-Grrrl
    8 months ago

    I’m coming up on 61 years young. I’m still on my feet, albeit with a cane. But something magical happens when I get on a ‍♀️ road bike… I can do it! Of course it takes days to recover, but just Monday one of my cycling partners said “well, you’re no different, we ALL go home and crash after a ride. I’ve known her for 15 years, and she “gets it” sometimes, but this was one of those instances where I really had to bite my tongue in order to not say anything untrue, unkind, or unnecessary.

    I love your cartoons!

  • Donna Steigleder moderator
    8 months ago

    @guitar-grrrl I think I would have been tempted to say something back in all seriousness like, “Really? I didn’t realize you were carrying an extra 200 lb. backpack the entire way too?” That’s what biking with MS is like. I would be happy to share more information with you about it.

  • Donna Steigleder moderator
    8 months ago

    Brooke’s post obviously hit home with each of you. Maybe a copy to your “favorite” insensitive commentator might be a way to open the door to how you feel about such comments? or an anonymous email maybe to make them think? Donna Steigleder Moderator

  • PegLeg
    8 months ago

    its maddening,,when your own mother accuses you of faking it, order to get attention,.. luckily my sisters step forward and set mom straight,,
    and friends, who you thought would always be there,, disappear,, that’s okay,, my dog loves me lol

  • Dimitri
    9 months ago

    I think Selma Blair’s attendance at the Oscars and her interview was a milestone for the MS community. I usually don’t follow celebrities, but after the Oscars I had friends contact me that they saw Selma Blair’s interview with Robin Roberts and that they had no idea what I go through with fatigue and speech issues.

    We need to be more vocal and visible.

  • KOrischak
    9 months ago

    When total strangers or acquaintances throw out the phrase “you don’t look sick” as they give you that look like they think I’m making it up, it bothers me. But when long time friends or family get angry when I don’t attend a party or gathering, it really upsets me. For the past 3-4 months I’ve had worsening symptoms….feel like someone’s hands are around my neck just squeezing, difficulty swallowing, trouble with talking, brain fog, so incredibly weak (collapsed in grocery store twice now), vision issues and severe headaches. My neurologist calls it “MS exasperation”. So, I’ve felt too bad to attend a party. Heck, I feel too bad to get out of PJs some days. Then a family member gets angry with me, stating “you don’t look sick”. To add frosting to the cake, we always exchange gifts at Christmas and for birthdays and this past Christmas I felt too bad to attend so I arranged for the gifts I bought and wrapped to be delivered early for the recipients. Then one family member says at a later birthday gathering, “Here’s your Christmas gift but I shouldn’t give it to you since you couldn’t be here Christmas Day.” All I could say was “Thank you for understanding and keep it if you want” and I walked away before I crammed that gift you know where. At 61, I’ve learned to handle things pretty well but this really bothers me. Having been run over and dragged by a car 48 years ago, I was left with a significant limp and had orthopedic challenges most my life and heard “you don’t look handicapped” more times than I can remember. Once I began to walk, they usually apologized, but this attitude from family really hurt. It helps knowing that others have been through the same thing.

  • aidaV
    8 months ago

    I hate when people say “you don’t look sick” Then I get pissed and I show them my port and then they are like what is that for, I’m like “are you f….. kidding me” I’ve been telling this whole time anout my autoimmune disease and you didn’t pay attention at all, I’m like whatever, bye Felicia hahhaah

  • Suzyq
    9 months ago

    The one I hate is when the Neurologist walks in and says, you’re looking good. HELLO, if you’re treating me for MS, shouldn’t your first question be, how are you feeling? I have fired several so called MS specialists over this.

  • SueK
    9 months ago

    Damn right I do not look sick! Proof I take care of myself. Proof I have self respect. Proof I am “me” and not my disease. Proof I am not looking for other’s pity. It is perfectly okay that I look okay. A guy struggling with hemorrhoids might look great. Should he bend over, drop his drawers and show his battle scars off to prove he is invisibly suffering? But if it makes you comfortable to wear your disease on your sleeve, do so. And if me meet, I will politely tell you – you sure look like hell!

  • littleturtle
    1 month ago

    LOL I love your comment.
    I am gonna remember that one. The hemorrhoids is perfect. LOL.
    Thank you for telling it like it is.
    I grew up with the idea that “look good, feel good” helps too. Lately I get tired just trying to “look good.” At 63 it is time consuming Lol.
    But I do want to say that keeping myself looking good hides how I feel and when I really want people to understand, so it ends up that that doesn’t help.

  • CarolynAnn
    8 months ago

    Wow. Good for you.

  • Kathi758
    3 weeks ago

    When I first got the news, I was in shock, How am I going to live?? then I would get told not to park in the handicapped spot I was too young and looked healthy. Who knew I didn’t look sick I thought it was out there for everyone to see. I fall a lot. I have all sorts of problems so if you really look you can tell, but what if I had cancer? or heart issues you cannot see those either so what about them Maybe we all should wear signs.?? now there isn’t enough make up to cover the look the bad walking.

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